Hi! New here, and I wish I knew about this forum earlier, many of you have so much knowledge and the way you support eachother is great. I am a nurse, but worked at the ER, so I don't even come close to you guys. Even if my dad had PC, but I guess I trusted the experts so I never felt the need to know that much. Anyway, I just wanted to tell you the story about my dad. A story that has changed my view on cancer, chemo and life extended treatment. I hear many people say they rather die than go through chemo. And that they don't understand why people would put themselves through more suffering. Icouldn't disagree more, but I guess you'll have to make that choice based on effect/side effects. My dads journey was as good as it can get when you have aggressive mcrpc in my opinion.
I am an only child and my mom always said she felt like she had two kids, me and my dad. He was the most childish, funny person, growing up with him was all fun and games every day and he came to all my matches, drove me to my friends and picked me up at parties in the early morning hours. He never talked much about stuf though, never hugged or said he loved us. But I knew he did, so I never missed that part. He was so helpful and always in a good mood, he loved his job as a truck driver and he kept working after he retired after 40 years in the same company, because he loved meeting people.
Early 2014 he got diagnosed with cancer at age 56. They caught it early, and hoped it hadn't spread after ralp, but they said it was very aggressive. Well, it had spread. So it took years before they saw the first metastases, lung first, then couple of years ago liver. But I was optimistic because there was always a plan.
He went through hormone treatment, radiation and chemo x 2. The only side effects he had was heat waves from the hormones. He had covid during chemo, he went to work during chemo and he worked out, went skiing for hours. So he managed to live a normal life. Before christmas he told me that psa had increased again and they stopped the last chemo treatment. It had went from 14 to 18. But he had an appointment in january, and the plan was Pluvicto.
I thought we had some time, because it had taken so long for him to get to this point, I must admit I don't know much about cancer, and I am glad I didnt at that time.
He had a PET-scan and it showed some edema on his brain, he didn't know much more, so we thought it was a side effect from meds or something "harmless". He still hadn't had any symptoms from his cancer.
He went to work same week and he went skiing around the 10th of january. 13th I got a call from my mom. He was nauseaus. Next day he went to the hospital, and we were told he had 2 brain metastases. One 5 cm on his cerebellum and one small on his brain stem. They put him through surgery and removed the biggest one. Next day he was feeling great, walked around and spoke to everyone he met and asked where they lived etc. I was positive and with my lack of knowledge I hoped Pluvicto would still be an option and that it would help, and maybe there was another option after that.
Unfortunately next day he woke up with a headache and fell unconscious pretty quick. They rushed to CT, and it showed brain edema. They gave him steroids iv, but it didn't work, so after a few hours they had to put him through surgery again. Went to see him at the ICU and nurses told us he had moved and he was breathing a lot on his own. Dr said he didn't like the fact that he hadn't woken up yet. We didn't know if he was going to wake up, or in what state if he did. It would have been good for him to let go in a way, but I just couldn't help but hope for him to wake up. Next day he still slept. Day after they decided to put him through yet another surgery to remove some clots and stuf that maybe was the reason. Another day went by and I noticed he didn't move as much, and the right side seemed to be weaker. Then 2 days after the last surgery, right when me and my mom was looking at him he opened his eyes. Can't explain that feeling.
He stared straight ahead and couldn't move his eyes at all, just blink. But I knew that it was him in there, I just felt it. I knew him so well and I recognised him even if he barely opened his eyes. Later that evening I visited him, still on a respirator his tounge stuck out a bit. I pushed it back in and said something silly. Then he stuck it back out. He couldn't move anything but his eyelids and tounge, but I knew he was joking. That's just the way he was. Later when mom came by she asked if he did it to mock me, and he blinked his eye.
The plan now was physio and radiation towards the brain stem if he got strong enough. He worked so hard when the physio therapist came by. He really did his best. He got stronger and after some days he managed to eat and talk. He sat in a chair a few times but got tired fast. Sister and brothers and family came by and when he had his good days he made us all laugh and was the centre of attention as always. The nurses said it was such a joy to come into his room because there was so much laughter and fun.
After a while the progress kind of stopped, he struggled to swallow a bit. From the moment he was able to speak he said he wanted to go home. Home to the house they built almost 40 years ago. He told one of the nurses that he wanted to go home to die. And he also told her that he wasn't scared. We took him home. It was the same as in the hospital. He joked, we laughed, we helped him, we held his hand and played his favourite songs. He didn't have any pain. He got weaker and weaker each day and after 5 days he slept most of the time, when he was awake and I tried to help him with stuf he just layed there making funny faces because he couldn't speak. I know those faces and he was 100 % alert. I just can't believe that someone can stay so positive at that stage. He had some moments with mom where they cried a bit, but in front of the rest of us he put his well known face on and did his best to keep the mood up.
Last day, 21st of february, 5 weeks after his very first symptoms, he just slept with his eyes closed, and I could hear on his breathing that the end was near. Just when me and mom held each of his hands he started his last breaths. There were a few with a long pause, then he inhaled. His eyes suddenly popped wide open. He opened his beautiful ice blue, kind eyes for the very last time. I cried so hard Then he turned all white in the face and exhaled with a sigh.
At that very moment I was so full of relief that I didn't cry at all.
I cried when they came and took him with them, it was hard to think that it was the very last time he went through that door. The door I have seen him come and go through so many times.
I held a speech at the funeral, I said that I have never looked at him as someone who has taught me much about life, we hadn't had those deep conversations, but that I now realize that nobody has taught me more about life than him. He showed me that money and material things are worth nothing compared to being surrounded by good people and good moments. As he was carried out we played Always look on the bright side of life. And when we came out people from his work had parked their trucks outside. That was the most moving part for me.
I miss him so much, he was my hero and I hope from the bottom of my heart that you all have a long and pain free path ahead of you. I hope they come up with new alternatives for those of you who are running out of them.
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