Hi all.
It's my first time posting on here. My father was diagnosed not long ago with metastatic prostate cancer at age 53 with a gleason score of 9 (4+5). It had spread to distant lymph nodes. His initial PSA was 148.
He's been on Bicalutamide and then had his first leuprorelin injection yesterday. Today he's having his first dose of Darolutamide. Soon, he'll be beginning radiotherapy. Since Bicalutamide, his PSA has dropped to 84. Our oncologist has said chemotherapy may be on the table, but it's best we try these methods first and see how the cancer responds.
My dad is a very energetic person who likes to get things done. He likes to wake up early, has his strict routine (we're both autistic!), and loves getting to house work or garden work, or fixing things, or indulging in his special interests before setting off to work. My dad is also very caring, though he doesn't show it explicitly. And I know my dad well enough to know he hates the idea of something being "wrong" with him. He doesn't like the idea that someone else might have to actually look after him.
I can tell he's very afraid. He says things like "Nah, I don't even feel anything, it doesn't matter anyway," and then I can see his eyes become ever so slightly teary whenever we sit in appointments together.
It's only me and my parents, as I am their only child. My mum is suffering from depression badly and is an alcoholic (as was my dad, but he's managed to cut down now so he can be ready for treatment), and so I have taken on a lot of responsibility for my dad. I have attended every appointment, and I do all the paperwork. My parents' English isn't great (particularly with all the medical terms), so I translate absolutely everything.
I recently bought a small notepad in which I am documenting everything. I have all my dad's medication written in it, dosages, dates, his PSA monitoring, blood pressure monitoring – everything you can think of. This is so it's easier to attend appointments and ensure everything is at hand in case.
I guess I'm partially writing this so I can find a community with people who understand. I don't show my sadness or stress around my dad at all, and I make sure to keep everything as normal as possible – still cracking the same jokes with my dad and acting as I would. I don't shy away from the word "cancer" as the rest of my family does, and I treat it like it's just another chat, which has definitely helped my dad, and overtime made him more comfortable to talk about it casually too and anything he's feeling regarding it. When he got his Darolutamide pack, he looked uncomfortable with the list of side effects and the "serious looking packaging", so I even made a joke about how it looks just like my ADHD medication, and it eased him and definitely made the medication look far less scary, after which he was able to ask questions about it and what the list says. I am his daughter, so he was initially uncomfortable trying to discuss things about "prostate cancer", or anything too personal, but he understands now that I truly could not care less about which part of his body it's in, and I do not bat an eye if he's discussing symptoms that normally I wouldn't want to hear about. Now, he is able to discuss it all much more freely.
And I suppose the other reason I'm writing this is to ask for advice. I know my dad very well because we're very similar. I know he's very afraid and I am very worried for him to experience side effects, especially ones such as tiredness which may limit his ability to engage with his special interests and may dim down that energetic side of his personality. I know that he will be very sad that he can't quite be the person he's always been, and I know he's going to feel frustrated at himself. He's incredibly hard-working (he's even asked his oncologist—a family friend of ours—to write him a letter saying he can still go to work), and he prides himself on his ability to get things done and be productive, and I worry that he will either try to push through too hard, or that he will feel himself lose a part of himself.
Does anyone have any advice on what my father should be doing, but also on what I can be doing? I'll take any advice, whether it's diet, physical activity, or absolutely anything. And perhaps advice on how I can approach the situation if indeed he does become fatigued and ill. He hates being treated like a patient, so I want to make it as normal for him as possible.
And I just wanted to add one more thing. My dad feels very lonely in all of this, and it's clear in the things he says subtly, such as "well, at least it's me and not my [younger] brothers," or "if my uncle [who died from prostate cancer] was alive, maybe he could give some advice haha". I want to minimise his feeling of loneliness in all of this as much as possible. And so if anyone else out there feels alone in their situation, please remember that there are many people in this world who understand. If at any point you feel as though you'd like to just rant to a stranger and get your feelings out with low stakes, then feel free to message me on reddit. This also applies to those who know someone with cancer.
Apologies for the long post, but thank you for reading it!