Father been passed to palliative care, what happens next?

Hi everyone, 

my dad has recently been told his cancer has spread further and there is no more that can be done for him. He has been referred to palliative care and we are waiting for them to contact us.
 

He was diagnosed with metastatic colon cancer to the liver in may 2018, he was told approx 6 months without chemo and 'some years' with treatment. He went on to have chemotherapy which was successful up until 3 months ago, he was then given a break and got his latest scan results yesterday which was bad news. 
 

I just wanted to know if anyone had experience with this, he was told on average people with this stage of cancer live for approx 4/5 months, however it could be earlier and could also go on to live longer, it was only an average and obviously no exact time could be given. 
 

to look at my dad and talk to him you wouldn't even know he was sick, he still looks well, talks, laughs, jokes (I know he is pretending in front of us that he is ok) but I can't get my head around the fact that he is dying.... he doesn't look like he is dying. 
 

when will this start to happen? And how will I know when he needs a doctor and when he doesn't. Who do I call if he is sick, I don't know if I ring the regular GP or someone else. Will it be all of a sudden or will we know when his time is close? I'm scared to go anywhere or be away from him incase something happens unexpectedly. 
 

My head is scrambled with it all and my heart is absolutely broken. I don't know how people manage to cope with this stuff but I feel like I'm falling apart and I don't know how I can come back from this. 
 

thank you! x

  • I am in the same position as you and just wanted to respond to your message. It's unbelievably painful isn't it? I could have written your post, in so much as I just wander about broken hearted and wondering how people cope... but as a friend pointed out, we are coping - even having the strength and courage to write that post shows you are. It's just so brutal and we have to take each day/hour/minute as it comes and be kind to ourselves. I'm thinking of you, sharing your pain and sending love and strength xxx

  • Thanks so much for your reply. It's weird to hear that other people understand how you feel when you actually feel like no one understands. I wish you all the best with your dad and pray he does not suffer and wish you strength! 
     

    im in limbo wondering what happens next, my dad isn't sick in himself at the moment and it's hard to imagine he will eventually become sick. I can't understand will he just slowly deteriorate, or will he take ill and not come back from it.... I suppose these are questions nobody knows the answer to. 
     

    im some ways I feel like a robot, getting on with things and trying to act like I'm ok, but inside I feel like I can't breathe and I'm about to wake up. I don't know how or when this nervous sick feeling in my stomach will ever go away! I never knew that heartbreak could cause such physical pain. 
     

    I wish you all the very best x

  • I know, it's the loneliest feeling in the world isn't it? Even if you have lots of support it can still feel like people don't truly understand what you're going through or that those that do (your loved ones) are in pain too so it's hard to let it out. It's just agony. But I have found that reaching out is definitely good. And please feel free to vent/chat on here to me. I understand how you feel and it's bloody awful. I'm with my dad now and trying to just process what's happening. The physical pain thing is so true - it actually hurts doesn't it? I just keep saying that it feels utterly brutal. I'm so sorry and am keeping you in my thoughts. Sending love and strength xxx

  • Also with regard to what happens next - the palliative team will be in touch very soon and they'll guide you. They really are amazing. Your family will have a dedicated contact to answer all your questions and someone will come to see your dad on a regular basis. So don't be worrying about what to do in certain situations because they have that all covered. They are there to support you too and ensure that your dad is looked after really well xx

  • Hi Daddysgirl and Clomoss,

    I've been in your situation twice now with both my Mum's cancer and my own and understand exactly how scary it is for everyone involved.

    I don't want to raise false hope but the statistics that clinicians quote are always only averages. These should always come with a caveat that they are only accurate for large groups of patients as no-one is an average parient.

    They don't take into account factors such as age, the presence of other conditions or diseases, the patient's fitness or what types of treatment may be available. 

    Three cases aren't a good study but my Mum lived pretty well for three years after being referred to palliative care and I was referred to palliative care in late 2013. On the other hand a friend's parent died within days of being diagnosed and referred on - the average is always somewhere between the extremes.

    All I can suggest is that you both try to make the most of the precious time you have with your loved ones and do your best not to waste it. If someone looks OK the chances are that that is how they feel at the moment. They won't think they are being brave and seeing that you are heartbroken will be hard - a lot of cancer patients on here say they spend so much time comforting friends and family. You will know when they start going downhill, you just know instinctively - just listen to what they tell you.

     

    Good luck and best wishes

    Dave 

  • Hi Dave, thanks for much for your reply. I really am so pleased that you have managed to defy the odds and fight this awful disease for such a long time, and go on to make othere's feel better is a very brave thing to do. 
     

    your reply have been very comforting so I thank you very much for this and wish you all the best! x