Coping with no prognosis

My dad has bladder cancer which spread to his kidney (removed) and to his bones & lung. He had chemo but the last lot didn't work and they have said there is no further treatment. I'm feeling in limbo because nobody will give us any sort of prognosis or timeframe for how long he has left. 

He is in a fair amount of pain from the bone mets, they keep adjusting his medication to try and keep on top of it. He has very limited mobility, but is about to have some physio to try and help.

He's always been very active and it's hard seeing him unable to walk without a frame. He's also lost a lot of weight as his appetite is bad and he gets nausea which drugs aren't helping with. I live a short flight away, my sibling is in a different country. He's being cared for by a family member and it's hard on her. 

I don't really know if I have a question here. I know there aren't any guarantees about life expectancy. But being so far away it is so hard not having any idea. If we knew the chances are he won't see Christmas we would probably do things very differently than if he could very well still be here next summer. How do you cope in situations like this? How do we prepare?

  • Hi Amy,

    I guess the only valid answer to tour question is that you can't prepare for this. Prognoses are notoriously difficult to get right. As you say, if you don't know if he'll be around at Christmas or still going strong next Summer it's hard to plan anything.

    The real Amy Pond would just jump into the Tardis and skip across space and time, but I don't suppose that's an option. Skype, FaceTime, email, Facebook to keep in touch and visit when you can. If Christmas is doubtful, visit sooner rather than later.

    Best wishes

    Dave

  • Hi AmyPond,

    I am so sorry to hear about your dad.  I lost my dad last June to stomach cancer and it is such an awful and difficult time.  We were also not given a time frame about how long my dad had left, although it can often be very difficult for doctors to give you a time frame, and if they do it is often just a guess.  One nurse said to me and my family that if you are given say 3 months, you often live your life up until those 3 months, counting down the days as it gets closer. And then when the 3 months are up and they are still here, you worry each day that it could be the last day.  I think what I'm trying to say is sometimes a time frame is not always the best solution.

    My dad was similar to your dad with weightloss and becoming less active.  Unfortunately there is no real way to prepare, I thought that because I knew what would happen that it would be easier and I would somehow be fine when it happened, but unfortunately that's not the case.  All I can say is spend as much time with your dad as you possibly can. Ensure you do everything you can so you are not left with regrets.  If you are able to fly over to see him then I would suggest doing it as soon as you are able.  I spent as much time as I could with my dad whilst he was well, which meant coming from from uni every weekend, but I'm so glad I did it.

    Take care x

  • Thank you both for your replies. I do understand why they don't give a timeframe, I imagine if we had one  - even if it was a range - it would feel like a ticking time bomb. This way we at least live in the moment.

    I'm planning another trip up next month in half term, and I phone regularly. I have two young kids so can't go up all the time. But I'm trying to get up as often as possible. It's really hard to believe this is all happening. He seemed so well the whole time he was having chemo, now all of a sudden he is sick.

  • Sadly I can totally relate to the feeling of living life in this awful limbo. My precious brother is 44, he is severely mentally disabled and cannot communicate and because he was unable to cope with treatment hhas terminal testicular cancer. He is unable to cope with hospitals so is also unable to have further scans etc so the only scan he had was in February last year when they found out his cancer had spread. After speaking to the various people who have to get involved when it is someone like my brother we were given vague range of prognosies ranging from months to 2 years, it has now been 22 months. He is on a lot of medication for his pain. He lives about 3 hours from me so I get to see him about once a month. I struggle with not knowing how long we have left, he is and always has been my baby more than my brother and I feel like I need to put my life on hold for him, last year I would not even go on holiday for a week, this year I did (it was my 15th wedding anniversary) but just felt guilty the whole time.

  • I'm so sorry to hear about your brother, that must be so hard to deal with. I know what you mean about feeling you have to put your life on hold. I guess not having any kind of idea means I just have to get on with things and hope there is more time rather than less.

  • Hi AmyPond, 

    I am so sorry to hear about your dad. I can relate to some of the things you are worrying about. My dad was diagnosed with Stage 4 Prostate Cancer in the beginning of the summer. My mom, sister and I are also not sure what to do or how to act sometimes, as we don't know what to expect day to day. My dad is mobile and in relatively good health, or seems to be okay right now. He just started his treatment in July when we found out about his cancer, and we find out this week if the injection is working. He has to take the injection every three months. This doesn't cure him, but it helps keep the cancer from growing. 

    Anyway, I just wanted to say that my family and I try to live in the moment, and I try not to think about the future too much because it makes me depressed thinking about it. I don't think there is really any way that any of us can prepare for the inevitable future. Try not to think so much about tomorrow, but try to cherish all the moments you have right now. I know it sounds cliche, but try to live your life to the fullest right now. I hope this has helped a little bit.