@shiningstar2 that's horrific, I am so sorry. Poor DH and poor you and DD 😢 Strangely enough, although my DH has Cancer of Unknown Primary, the genetic testing came back with 'most consistent with mesothelioma'. We are all wondering now, including his oncologist, if although it seemed unlikely at time we got the report, there was maybe something in it after all, since he is dying from a lung condition associated with the metastatic cancer in his body, despite the fact that it's not in his lungs but in his bones and lymphatic system. They proposed that it was a rare subtype that begins in the testis. Who wants a rare type of a rare cancer?! For CUP, the median survival is 4-15 months, so like you we knew from the outset how aggressive it would be. It's 6 months next Thursday since his diagnosis, and I don't know if he will still be with us then.
Today was really hard. At one point I was sitting rubbing his back and silently weeping. He has been having more frequent hypoxic incidents and of course he gets panicky and agitated. He is constantly coughing up and spitting up blood-tinged fluid. He finds it really uncomfortable to lay down as it restricts his breathing and exacerbates his back pain, so he is usually sitting on the side of the bed (it has an air mattress so even that's a challenge) with the head end raised, clinging on to the handle there, hunched forward with his chin on his chest, panting and moaning. He is 62 and when I see him like that I would believe you if you told me he was a man in his 90s.
The Dr from pain management came twice today and she has put him on a sedative which supports him to continue to breathe independently, unlike high doses of morphine. It supposedly helps a person to become less agitated about being short of breath and is often used when taking someone off a ventilator. I really hope it works, as he was on the border between restless and agitated when I left today and I still wouldn't consider him to be comfortable in either mind or body.
Another horrendous decision to make is a financial one. We have always been totally committed to joint finances. When he dies, any bank account in this country in his name, including joint, will be frozen. The notification goes immediately through government channels because of the ID card system we have where we live. I have had to open an account in my name, which we agreed I would do, and at some point I have to move pretty much all of our money from the joint account into my new one, especially as I have to pay a year's rent upfront next month. As soon as I do that, it's an acknowledgement that he is never coming home and it signals to him that I am preparing for his death. So, I am putting off doing it but I cannot risk leaving it too late. What an awful position to be in. He hardly looks at his phone these last few days and he gave me the PIN for it, so I might do it with his phone to hand and delete the notification straight away. I don't even want to be thinking like this.