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Not sure my husband understands diagnosis...

No. of entries: 7 | Posted on 21 Sep 2013 12:03 AM

Not sure my husband understands diagnosis...

  • Hi, my husband was diagnosed with stage 4 gullet cancer in Feb, told that they wouldn't operate and that the cancer was deemed not curable. He's just finished 6 cycles of ECX, which he's tolerated remarkably well and situation appears stable. Life has been continuing pretty much as normal, his work is allowing him to work from home and his eating ability has improved recently, too. However, what I'm wondering is whether he is fully aware what his diagnosis means. I've read quite widely on reputable websites and have been to all appts with him. By all accounts, the outlook isn't good. Yet he keeps saying things like 'when I'm better, ...'. Now, don't get me wrong, I understand that positivity is essential, but surely he doesn't need to try and 'deceive' me? 'I'm going to beat this'... Etc. We've got two small boys and he hasn't ever spent huge amounts of time doing things with them, so I would have thought he'd make more of an effort now, but no. I'm worried about how they will remember him... Onc appointment coming up soon, would you get in touch with Dr beforehand and outline these concerns? Just so that Dr may go over diagnosis to check understanding? Or should I just keep out of it, stop meddling? This is so hard! Thanks.
  • Maybe he wants to pretend it is not happening?   Try to plan some happy days so that there will be at least a few good memories for your children.

  • Hi Tanni.

    My husband was exactly the same and I  didn't understand it either. I went to see my GP and mentioned this to him at my appointment and he said it was important for me to leave him be. I've come across it and spoken of it with many since and it's more common than you'd imagine. It is a coping mechanism to try and stay positive and focused. He knows the score, but maybe like my John knew he would cave in if he allowed himself to outwardly show it.

    My husband has since changed that attitude as he's become more unwell and I'd give ANYTHING to have my positive, cheerful, funny, happy man back. Cherish him and go with the flow is my advice and don't burst his imaginary bubble of hope because the alternative is not good.

    Thinking of you and your family at this difficult time and wishing you everything I wish for myself.

    Love Zute xxx

  • Hi Tanni,

    My dads diagnosis was always a terminal one and I had difficulty understanding why he would talk as if it was curable. I always worried that he didn't fully understand what he was being told at his appointments but when I look back, he did-it's emotional self-preservation, he has to stay hopeful. The way my dad shows his 'fighting spirit' is by believing that he can overcome his diagnosis. Like Zute said-he needs stay positive and focused.

    Thinking of you all xxx

  • Hi Tanni, as others have said, I think this is his way of coping and emotional preservation. My husband (same diagnosis) is aware of his situation, but doesn't speak about it very often. His view is that cancer has become part of him and his life, and he has to learn to deal with it by continuing to live as normally as possible for as long as possible. Thankfully, he has been able to do this so far. He isn't burying his head in the sand, but similarly, isn't (as I thought  one would do in this situation) giving up work and living his "bucket list". When I asked him about that, he said that his "bucketlist" is being able to enjoy every day as much as he can, not doing anything dramatically different, but taking a little more time to smell the roses, so to speak.

    I think that if your husband is coping well with the outlook that he has, then it's perhaps best to maintain that for as long as possible. Plan little family outings and start to store up the memories. I realise that you also need to talk about your awareness of the situation, and that is important for you. Hopefully, you have family/friends you can talk to, and always remember that we are all here to listen and chat. Take care of yourself xx  

  • Hi Tanni,

    Thank you for posting this, I am in a similar situation with my Mum, she has GBM 4 Brain Cancer, which is terminal, they have stopped the palliative treatment earlier than expected and last week we were told she might only have days (although she seems to have perked up a lot and is now eating like a trooper!!)...but both my Dad and Mum are both always talking about 'curing and beating' this cancer.

    Its not easy, but after reading all of the replies to your post I know I am not alone on this, I have talked to my Dad about it as I needed to make sure that he knows the outcome, and he does realise that there is no cure but he is just trying to stay positive for Mum, and I can see she is trying to stay positive for him, so everyone is right when they say to kind of 'go along with it'.  I'm struggling with it, I have always been an honest person and would rather know the facts and the truth, and I have built my hopes up so many times along this journey, only to be knocked back down to earth that I think it is my 'coping mechanism' stopping me from doing the same as them.  I guess the truth is that everyone copes in their own way.

  • Hi nml13, I have been the same regarding wanting to know the facts and what to expect. I find the emotional roller coaster that comes with a close relative being diagnosed exhausting so to make that less volatile I look at the realistic scenario I may be faced with (although hearing further bad news still comes as a shock). Everyone does cope differently, like you said. The difficult thing comes when your coping mechanism is so different to someone else's, it feels incompatible almost until coming on here and discovering others are feeling the same. It is such a comfort to not feel alone.

    Jay x