u/ironyfreeannie

My dad (63M) was diagnosed with Stage 4 metastatic Cholangiocarcinoma at the beginning of May; he opted for aggressive treatment and did radiation, immunotherapy and multiple rounds of chemotherapy. In mid-July, he collapsed after a shower and was hospitalized. They found blood clots in his lungs and ascites in his lungs and kidneys. The doctors estimated he had days left, so he made the decision to stop all treatment and enter hospice.

He has now been in hospice for 31 days and I feel like I’m living in hell.

I have two young children and I live an hour away from my parents, so I have been living out of a suitcase at their home since he entered hospice. My husband visits on weekends because he still has to work, so I have very little help with the kids while I’m here. My mom is destroyed over what’s happening and cannot emotionally regulate in any way whatsoever; she has to take a sedative x2 daily so she can no longer drive. So I drive the 40 minutes there and 40 minutes back to and from hospice every single day.

I’m mentally and physically exhausted beyond belief.

When my dad was first moved to hospice, he was very accepting of his fate and reflected on his life with love and kindness. That version of him is long gone. Every day he’s still here and lucid, he gets a little more angry, bitter and demanding. At first I didn’t mind running around and bringing him things to give him comfort (food, alcohol, etc), but it quickly became a thankless task and he’s even become quite cruel towards us.

Every time someone says how lucky we are to still have this time with him, I want to scream.

His dignity has been completely stripped away. He can’t walk because of the blood clots and edema in his legs. He has little to no appetite and when he can eat, everything tastes bad because chemo killed his taste buds. He’s using a catheter and diapers - although, most days he’s too constipated to have a bowel movement. My dad is someone who lived his entire life in paranoia of getting sick like this; it’s truly his worst nightmare realized. And I’m supposed to feel “lucky”?

I hate that there is no timeline for how long this will last. It’s a horrifying thought that this could go on for weeks, or god forbid, months. I don’t want him to suffer anymore, and selfishly, I don’t want to live my life in limbo anymore. I miss my husband, my home and what my life was like before he got sick. I feel like a selfish monster for praying for this to end, but I just don’t know how much more of this I can take.

He was diagnosed with stage 4 cholangiocarcinoma in early May and he’ll be gone by end of the month - if not the end of the week.

On Wednesday he was hospitalized after collapsing when he got out of the shower. My mom found him convulsing on the ground. He was rushed to the hospital by ambulance and they found blood clots all throughout his lungs, as well as fluid. They have him on blood thinners and have drained the fluid, but the doctor told us today that all of his vital organs are failing rapidly.

Since being diagnosed he has done nonstop chemo, immunotherapy and five rounds of radiation - all for nothing. It exhausted him, made him angry, ruined his appetite and taste buds and made him nauseous. I wish he had skipped treatment and pursued palliative pain management instead. All he’s done is suffer.

It is complete hell seeing him like this. It all feels so fucking unfair.

I’ve been twice this week and noticed they’re playing the old park entrance music from the Paramount days. First it was the theme from St. Elmo’s Fire and today it was Forest Gump! I find it very comforting and nostalgic.

I don’t understand how this could happen. At the end of March, he started to experience low appetite, stomach pain and insomnia. His doctor told him that it was just signs of getting older. We went on a family vacation to Portugal in April and the pain continued, so he went to the ER the day we got back.

They found malignant tumours in his lungs, liver and spine. He was diagnosed with Stage 4B Bile Duct Cancer (cholangiocarcinoma) and its terminal.

It’s been two weeks since his diagnosis and he already looks like a shell of himself. His skin is yellow and paper thin, his face is gaunt and his ankles are swollen and covered in sores because his liver is failing. He can’t sleep because of the pain and he can’t eat because of the tumours.

Everyone is telling me to optimistic about the chemo and the radiation and immunotherapy, but it feels futile. He is dying and he knows it too. And I’m irrationally angry at every story I’m told about someone living years with terminal cancer because I just know that’s not the case for him.

I love my dad so much. I’m not ready for this. I’m not ready to lose him. I’m not ready for my kids to grow up without their grandfather. I’m not ready for my mom to be a widow at 62. Everything feels so fucking cruel and unfair.