End of life cancer diagnosis for elderly parent

Hello, I'm new and this is my first post. I'm 43 and was diagnosed as autistic 3 months ago. I've not told my extended family yet as they are not fully onboard with neuro divergent brains as a concept. My dad has been diagnosed with end of life cancer. My sister in law set up a group chat to update the family. I live 6 hours away from my extended family. I have been told to stop asking questions on the group chat as it is upsetting people. I tried to ring Macmillan but can't get through. I wondered if anyone had a similar experience and how you navigate it all? I'm not very emotional and want the facts but I also want to support my dad mentally as he is now processing he is end of life. But I keep saying the wrong things. I feel like I need a list of rules! Thanks 

Parents
  • Hi!

    Let me just say in advance: I’m very sorry you have to deal with all of that on top of an already difficult and upsetting situation.

    A few years ago, my father got diagnosed with cancer and it turned out that his tumour was pretty advanced. For a few weeks we were left with the prognosis that the tumour had very likely already spread. When the operations were done and the lab results came, it became clear that this was luckily not the case. During the uncertain weeks my little sister was sometimes crying and constantly searching physical contact to my parents. I withdrew quite a bit to research about my father’s condition, his chances of survival in different scenarios, possible treatments and so on. I often asked “blunt” questions like “Does it look like papa is going to die?” and wanted to know every detail. The people around me were much more tolerant since I was only 15 at the time. But I got in trouble with my parents since my father obviously didn’t like thinking about it like that and because I upset my sister with this kind of language. 
    Sometimes people forget that everyone reacts differently to such devastating news. Some get emotional, some start projects in a sudden burst of left over energy and some just need to know every detail. You have the right to ask those questions and if not in the group chat then you should be referred to one person in particular that answers you. It is understandable to want information, especially with so much physical distance between you and your father.

    Oh, and one last thing. For me, all of those emotions I wasn’t able to identify or process at all for a long time came crushing down at some point. At the time, I felt ashamed because it was already clear that my father is most probably going to be fine under treatment and I felt like I should be able to deal with that after not having a problem for most of the time when all of the others were in a state of shock. It was only after he had to go to the hospital for suspected myocarditis that I suddenly and unexpectedly broke down in front of a classmate and finally talked a bit about everything that had happened. Don’t ever feel ashamed. I understand that your situation is far more difficult and I wish you all the best!

    (I hope this didn’t sound like the “I know what you’re going through”-phrase, because I obviously don’t.)

Reply
  • Hi!

    Let me just say in advance: I’m very sorry you have to deal with all of that on top of an already difficult and upsetting situation.

    A few years ago, my father got diagnosed with cancer and it turned out that his tumour was pretty advanced. For a few weeks we were left with the prognosis that the tumour had very likely already spread. When the operations were done and the lab results came, it became clear that this was luckily not the case. During the uncertain weeks my little sister was sometimes crying and constantly searching physical contact to my parents. I withdrew quite a bit to research about my father’s condition, his chances of survival in different scenarios, possible treatments and so on. I often asked “blunt” questions like “Does it look like papa is going to die?” and wanted to know every detail. The people around me were much more tolerant since I was only 15 at the time. But I got in trouble with my parents since my father obviously didn’t like thinking about it like that and because I upset my sister with this kind of language. 
    Sometimes people forget that everyone reacts differently to such devastating news. Some get emotional, some start projects in a sudden burst of left over energy and some just need to know every detail. You have the right to ask those questions and if not in the group chat then you should be referred to one person in particular that answers you. It is understandable to want information, especially with so much physical distance between you and your father.

    Oh, and one last thing. For me, all of those emotions I wasn’t able to identify or process at all for a long time came crushing down at some point. At the time, I felt ashamed because it was already clear that my father is most probably going to be fine under treatment and I felt like I should be able to deal with that after not having a problem for most of the time when all of the others were in a state of shock. It was only after he had to go to the hospital for suspected myocarditis that I suddenly and unexpectedly broke down in front of a classmate and finally talked a bit about everything that had happened. Don’t ever feel ashamed. I understand that your situation is far more difficult and I wish you all the best!

    (I hope this didn’t sound like the “I know what you’re going through”-phrase, because I obviously don’t.)

Children
  • Thank you for sharing your experience, that does sound hard, especially at the young age you were. Everyone sharing their experience is actually very helpful here. I feel I may be going through a similar process in the sense I want all the facts to know what is going on and also be able to understand how he can be the most comfortable at the end. I think I'll have more of a delayed reaction to the emotional element of this process. And don't worry, I don't think you are saying 'I know what you are going through', I appreciate your honesty in your personal experience.