My wife is dying and I'm scared

Today it's finally hit me. My lovely wife J was diagnosed with bowel cancer in the autumn of 2010.  We had both recently retired and were looking forward to an active life together, enjoying our new grandchildren and doing more of the travelling we love. We are both 65, soul mates and have hardly ever been apart since we were 18.

The surgery went extremely well ( section of colon removed and joined up on same day - no colostomy) and J was soon able to start her first round of chemo.  That had some horrible side effects and left her exhausted but by summer last year we were able to go away again and began to pick up on our old life together.  

By the end of 2011 however it was clear the cancer had taken hold in the liver and lungs. J  almost decided to call it a day with the chemo after the first experience but I suspect the birth of another grandchild made her want to give it another go.

The second round of chemo  caused a lot of pain and discomfort and more exhaustion.  And it did little good it seems.  We were told yesterday that it had not worked and there are no further realistic options for treatment.

We have had excellent care from our oncologist - I don't mean to make him sound cold and unfeeling as he wasn't at all.  He was sympathetic and answered every question and never hurried us.

But that, stripped of his kindness, was what it amounted to. It wasn't welcome news but nor was it a surprise. We can expect J to survive three to six months more, with the cancers in the liver becoming progressively more troublesome.  They are already pressing on the stomach, causing pain and  affecting her appetite.

The oncologist has referred us to the community Macmillan nurse who has already been in touch. We hope to meet her soon.  But after 18 months of care and attention and support from this excellent doctor and some superb oncology nurses it feels a bit like we have been cast adrift. 

This morning, I think for the first time since cancer came into our lives, including all the post-op and chemo days, J refused the breakfast I take to her in bed every day.  She was feeling nauseous (which even through the chemo was never such a problem) .  I gave her one of the anti-nausea pills we never needed through her chemo and she has gone back to sleep which happily she is usually able to do through the worst patches. 

Left alone, I realise perhaps for the first time, that this is probably how it is from here on. All hope gone.  Downhill from now on. We have known for 18 months that J would not survive her cancer.  She faced it so courageously that I felt I had to do the same.  Her way of dealing with it was to read and understand everything she could about her condition. She insisted on seeing her scans and her tumours and knew what to expect. We all have to die, she said. She just had a bit of notice.

My way of coping was simply not to think about the future.  I just tried to live a day at a time and to make life as comfortable and fulfilling  as I could for us - while I could. Today I can't ignore the fact that those days are running out.

 I'm not surprised she is feeling sick and can't face breakfast this morning.  I am too. In her case it may be the tumour pressing on her stomach.  But I think its probably also reaction to yesterday's confirmation of our worst expectations...and the sense of being abandoned. It certainly is for me.  I suppose we had  built up a dependency on our cancer team - we saw them all so regularly for blood tests, treatments and consultations. They were always just a phone call away in a crisis.  The appointments gave purpose and direction to our lives and the contacts were comforting... even if they came with a sharp needle or bad news.

 We accept there is no more they can do for us.  But the loss of those comforting contacts and referral to palliative care feels like a bereavement in itself.

Well, I guess we have worse to come. And when I read some of the appalling experiences and troubles of others battling cancer here I realise we have in fact been extremely lucky in the support and treatment we have had.  The good fortune we have otherwise enjoyed through our lives makes me ashamed of my self-pity.  I have a good family, a lovely home, more money than we known what to do with. But I'm about to lose the only thing that really matters.

One bout of nausea is nothing in the scheme of things, I know.  But today I experienced my first real taste of the  loneliness and hopelessness that lies ahead. And I can't pretend to myself any more that I'm not afraid.  So I am writing down my feelings here in the hope it will help me cope with these fears for J's sake.

Buts it's a dilemma. If she feels the same, I hope she will share those feelings with me and give me the chance to offer some comfort.  But I don't feel I can let her final days be filled with my grief.   Or am I just depriving her in her final days of the opportunity I would want to offer comfort to her partner?

  • so very sorry to read your story. I can empathise we lost 3 members of my family to cancer within 12 months , it took a long time to "sink in ". 

    I myself found i had to take one day at a time, as we Nursed dad at home,there was so much going on around us, agencies to liase with macmillan/marie curie/gp etc. Just like yourself so much going on i feel its very hard to take a step back, take a breath and relax.

    I wish i had the right words to say, i dont think anyone  has. yes as your wife says we are all going to die, but like my mum you have been with your wife many years, she has been your soulmate, friend and rock. I feel that what your wife chose to do, i.e. look at her scan reports etc where of help to her in some way understanding what to expect and what was happening to her body and the changes she has to cope with.

    With all the help in the world it is so hard to watch a loved one suffering and knowing that they are going to pass away . 

    I am sure in time to come you will be thankful for the precious time you had together and knowing that you was there to help and support your wife through her pain.  You are very strong even though you may not feel it at the moment. 

    I will hold you in my thoughts and prayers. 

    j gibson

  • Thank you Jan for your very kind thoughts and words. 

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    I have just read your post after coming home from the Macmillan unit my husband  (57) has been transferred to from hospital.

    So many of your thoughts are echoed by me.  We did not have children, lived for each other and our respective careers, have a lovely home and more money than we know what to with and have been blessed with close and loving friends but I am losing my best friend and love of thirty one years and I understand completely your feelings of loss and self pity.  I have been grieving the loss of my husband for weeks as the man he was has slowly been overtaken by the cancer spreading through his body and it has now reached his brain.  

    It has broken my heart over the past 12 weeks to see him suffering and fighting so hard to get some more time so that he could sort out 'stuff' so that I wouldn't have to do it when he was no longer here.

    Tonight I had to tell the Macmillan nursing team what my wishes would be should he require resuscitation as he is too sleepy and out of it to talk for long and it was an easy one as he had told me two days earlier that he wants this all to be over and that he can't fight any more.

    He is both frightened of and resigned to the final outcome and I can't find the words to comfort him; all I can do is to be there and hold his hand, support him when he is sick and make sure he is as comfortable as possible.

    You are in my thoughts.

     

     

     

     

  • Oh Moneypenney....my heart goes out to you.  And to your husband who has fought so hard to lighten your load when he is no longer able to be there for you. 

    What an awful choice you have had to make for him. Though I'm sure you have made the right one. Of course we can't bear our dear ones to die and leave us alone.  But we want even less to see them suffering needlessly. 

    You say you cannot find the words to comfort him. That must add to your own pain. But the support he needs now maybe beyond words.  I'm sure that just being there and holding him when you can will help to lighten his darkness and ease his fears.

     I hope that I can find the courage and selflessness you have to do this when the time inevitably comes.  And not let my own terrors prevent me from comforting my lovely wife in her final hours of need. 

  • Hi Asher - If only we could change how things are - I lost my husand of 38 years on the 2nd July after he fought the cancer for 2 years - there was never any doubt of the outcome but you do still cling on to the hope that somehow you might be the ones to prove them wrong.Apart from worrying about him I was so frightened like yourself about what the future would be & whether I could cope but please believe me I did & you will & my husbands end was not traumatic or uncomfortable - we had been on holiday only 3 weeks before, he was unwell with increasing nausea etc but after a few days in hospital came back home & over the next 10 days slowly improved - saturday he wasn't so good but was able to get up just very tired ( he had a bed in the living room after he came home from hospital as he couldn't manage the stairs) he had a good night, on Sunday got his self up & dressed & in a chair, at lunchtime seemed to get progressively more tired but was able to hold a reasonable conversation etc by 3 in the afternoon he went to bed for a nap & fell fast asleep - he didn't wake again & died at 1.30 am - there was nothing horrid, no pain or trauma he just went to sleep & stopped breathing - in one second he was there & the next gone- I'm sorry I dont want to frighten you but I was so scared of what "the end" would bring & whether I could do it but he was at home with his family as he wanted & just seemed to how it was meant to be - now the "keeping going" bit I'm not sure I'm doing so well but I can be pleased that I fulfilled his final wishes. My advice ( now there's arrogance assuming you want it ) ask for what you what - occupational therapists. district nurses, macmillan if available , hospice community teams - no dont ask tell them what you want & remember this is your family & you need to manage it how it feels best for you so dont be afraid of saying so - to us my husband dying was a private family event & we needed to do it ourway so I just told the district nurses I didn't want them to come - they weren't sure but it was what we needed & was right for us.I am so sorry you find yourself here but you can do this & remember the love between you & your wife will be with you forever & you will handle it as best you can & that is the best comfort you can give her - remember this is about the whole of your lives together & you will get through this together just as you have over the rest of your time together.

    Tuesday

  • I'm so sorry you're going through this.  Cancer is an awful disease and only until you have first hand experience do you realise who devastatingly cruel it is.

    Toward the end with dad I liked to think that he was going to die, but he wasn't dying.  There is a difference.  It may help to read the end of life section on here, it is very informative and amazingly accurate, it may help keep you calm when the time comes.

    Not all cancer deaths are awful, dad's was very peaceful and we were very lucky that we had a chance to create the best ending we could for him, it would never be ideal, but we had a shot at it and although you don't want to face this, you are lucky that you can be with her and make sure her end is as peaceful and filled with love as possible.  Your wedding day was magical, you have a chance to make this next bit as good as it can be.

    My thoughts are with you, be strong, you can do this xx

  • Thank you Tuesday2 and Mollyb for your  reassurances and for sharing your experiences.  I appreciate your kind support when you too are grieving.  

    I have looked through the end of life section as you suggested and did find it very helpful and informative.   It wasn't easy to find so I have made a link to it here. .

    Knowing what to expect helps to quell some of the anxiety.  But mostly I think I am getting by because  I'm incapable of living in the permanent state of fear I would feel if I were to constantly think about what lies ahead.  So I just concentrate on the day-to-day business of keeping my dear wife as comfortable and happy as I can. And she, bless her, does her utmost to stay cheerful and upbeat despite becoming increasingly uncomfortable.  I believe she forces herself to do it for my sake.  That alone would shame me into doing the same if I needed it. So I "whistle a happy tune so no one will suspect I'm afraid..."

    If I think about it rationally (which isn't often)  I tell myself that worrying about what's to come for both of us won't stop any of it happening so we might as well make the most of what we have now. But mostly I think its not really me listening to my own good advice.  It is just instinctive avoidance - I just don't go there in my head because its not a nice place to go. I don't think about the future because I can't bear to. Its not being strong - but sometimes there is strength to be found in weakness. 

  • H

    Youi are going through something so horrible no one wants to think about it so dont worry about being "rationale" or how you are coping - you are doing it & you are coping & that is what matters not "how"

    Everyone finds their own way - for some its floods of tears, some drink, some just take it minute by minute , some like me did it all - lots of tears although not in front of him, more than the odd glass or 2 when things felt overwhelming but for us it was "business as usual" I moaned about him leaving his shoes in the middle of the floor & actually reading all the junk mail & he complained about my taste in tv programs & having the radio on too loud - maybe not the ending envisaged in the films but it worked for us

    .As for "instinctive avoidance" who cares - someone told me that the "survival gene" kicks in at such times & I think they're right - instinctively you will do what is right for you & whatever it is do it - dont listen to other people or worry what they'll think just do what is right for you & it will be right for you both

    .My thoughts are with you & I know you will have the strength to give your wife all the love that is possible. & if you need to have a rant or complain about the bloody unfairness of it all (or anything else) then please feel free

    Kate

    Tuesday

  • Hi I am going through this journey also - my wife of 65 was diagnosed with inoperable glioblastoma and now on a daily regimen of radiation and chemo- her symptoms are fatigue and loss of feeling on her left side- I am trying to come to grips with my new life but facing bouts of depression- thank God her family is helping with care taking but the daily grind is having a very tough effect on me - I know the major fight is ahead so I need help making sense of this

  • Sending best wishes to you x