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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Soton4ever
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Yes, and that is the greatest gift I could ever get, being able to look back on those weeks and smile. It is the time of my life I appriciate the most, it is so valuable for me, and it was such an honour to take care of him and take him home. There are huge windows and a great view over the place we both grew up, and on the other side of the valley he could se the farm his parents owned where I have so many childhood memories. I know that if he had been sad in front of me I'd had trouble dealing with that. You can't really expect someone to be a certain way when they are dying, but it made the difference. I cry sometimes too, but it's because I miss his beautiful childish impatient soul ❤️
Yeah I've been thinking alot about that the last years, imagined it would be pain and suffering. Every family is different and we have never been one to talk much about our feelings, but there's nothing unspoken between us and I am so glad we just spent time, held his hand, laughed and spoke about everyday stuf instead of crying and talking about how sad it was. We knew it was sad and that he had wished to see his two grandkids grow up, he was like a father for them after they lost their father almost 10 years ago. Again, everyone has different needs, but I think it's important to say that it doesn't have to be that complicated. He was the one who kept out mood and spirit up, and I admire him so much for that.
beautiful story. Has me choked up. Seeing our parents come in and out of the front door of the house the worked so hard to get all those years ago. All the memories , the days full of energy and laughs and jokes .. I never quite believed we’d all one day get old and deal with whaat comes with aging. I believe we’ll all meet again one day
I wish I believed it too. But in a way, I feel he's around. He'll always be around, just not the same way. But all the things he stood for, what he taught me, his humour, what he said and did is very much alive. He once said he thought he'd be reincarnated as a fly. Lots of them now in the summer, and I have a hard time killing them 😅 When they sit on my arm I often think "hi dad". Not that I think it's him, haha, it just feels good. I know he would irritate me if it was him.
Theres a song in my language that's very common at funerals etc, it's christian, but I like it anyway. My dads mom wrote the last verse in a book I had when I was 7. It's difficult to translate to english, but it goes like this:
I think it's possible to have fun even in a situation like that. I mean, why not? It is what it is, and nothings gonna change that. I know thats a lot to ask, and a bold statement, even offensive, and I understand it doesn't work for everybody, but I want to let people know it is ok. And of course, my dad was like that, the whole family is. It's not something I would have expected from anybody.
I am also a single child. So close to my parents. My dad was diagnosed in Feb 2024, when I was 5 months pregnant. My parents live in India and I am in Canada. my parents made it for my delivery and postpartum journey even though my dad was diagnosed with stage 4 PC.
He is so much similar to your dad. I have never seen him worry about what’s going to happen next. He believes that he is going to be there for the next 15 years and see his grand son grow and do amazing things.
We don’t talk about this disease and just live life as it was before the diagnosis. He is making travel plans for 2026. I cry alone thinking about how unfair life has been and anticipating grief. I am also grateful that he is asymptomatic and has no pain or difficulty so far.
I am sorry to hear about your dad, but I am so happy for you that he is dealing with it like that. It helps so much, and as I have said to many people, we are actually the ones whos going to live after they die. I know it was selfish of me wanting him to wake up after his brain edema, and I wouldn't have wanted it if he had been suffering, but I think it's ok to be selfish, because we are the ones who are gonna continue living. The choices aren't ours anyway, but hoping for a little more time together is ok. I would never, never want him to suffer though.
Hours before my brother Steve died of stomach cancer I visited him in the VA hospital as he was just waking up. This is the first thing he said to me when he saw me there "john I was almost there and it ain't so bad"..... We never discussed where "there was". But your dear Dad (Poppa) is there and it ain't so bad. You are a wonderful offspring and may God Bless your Dad, your Mother and You as well as all of your relatives and friends. Stay with us and post from time to time.... we need you.
Thank yoy for your kind words ❤️ Sorry about your brother. Hearing that from him must have been so helpful, and I am a big fan of not having to talk about everything. If you know you know. And if you know eachother you know. I think talking about things often makes it more complicated or awkward, but of course other times it helps.
So, so true. I remember saying to my cousin that I wish my dad was an asshole so it wouldn't be so sad, but I really don't. I am glad he was him, and it makes me appriciate the grief in a weird way.
I’m sorry he’s gone but he was every bit your hero and you his I’m sure. Just a beautiful story. Thank you for sharing this and hold his memory close as I know you will.
Thank you so much for your kind words. It means a lot ❤️ I love to talk about him, and for me it helps. I know it's too much for many people, but for me personally it's important to tell his story. This unfair faith and horrible disease he and so many people suffer from every day.
I've been thinking alot about what I can do to honour him. For me he was a great man, he was the favourite uncle, because he was like a child himself, and kids loved him.
He could never hold a speech or anything like that, but he was always centre of attention when he was around family, friends and at work.
He didn't have any education, but he was the best employee you could ask for, he was so proud of his job as a truck driver for the dairy company. It says a lot when he loved it so much that as a retired and after 40 years, he still worked extra while on chemo and radiation. Straight from the hospital to work. "But I think it's so much fun" he replied when people asked if he weren't supposed to rest. All the people he delivered to liked him too, because he always talked to them and made jokes, like made fun of them, but never in a rude way. He asked them where they were from and it has made me realize that when people do that, and also make jokes, you feel special. Like they see you.
My mum and I went to see his co workers after the funeral and thanked them for being there with the cars, the intention was a motorcade, but there was so little space. Didn't matter, we were so moved by it anyway. His co workers said so many nice things about him, they said he was always happy and his boss said when dad walked by his office in the morning he just waited for the laughter to break loose in the next room. One of them complimented my speech and the things I said about having learned about life and he said you know your father had the best job one could ever have, the most beautiful house in the world, he had the best wife, best daughter and grandkids, because he was so satisfied with what he had and didn't long for more or better.
For me that makes me want to do something in his memory, because I think appreciating what you have is such an inportant thing if you want to live a happy life. And he sure did. I want everybody to be happy and understand that money isn't worth much. I understand that I am priveliged to say that, but so many people who have more than enough use so much time and energy on work, career and money. Many people could afford taking a day off and be with their loved ones, but we have become so materialistic. I know theres a lot of poverty, and many people struggle, so I understand that money is a concern for them, but for others having two brand new cars, going on fancy holidays and having an instagram-friendly home is more important than being with family. I want to continue his legacy by sharing that. I owe him that. And also I want to help people in the same situation as me by saying you can be happy after losing a loved one. You just have to focus on what you had, cherish the moments, remember what made you laugh, appriciate what you've learned and don't think about how sad it is all the time, and don't focus on what could have been. Easier said than done, I know, but sometimes you can choose how you think. What really has worked for me is to take time to grief, I look at pictures when I'm home alone, put on the songs that makes me think of him. And I cry like a baby. I have a playlist. And I play it in the car, but I always finish with Always look on the bright side of life. Other times I push it away, knowing I will take time later. I think if you don't allow yourself to do that once in a while, the grief will become an abcess in your heart that continues to grow. You have to empty it sometimes. But if you focus on it all the time you will become grief. It will take over your life. It will become your identity.
I also see alot of people who have loved ones with cancer ask what they should do to make the most of their last time together. Should they record their voice, take pictures, ask quiestions, have them tell them about their past? As mentioned earlier, everyones different, but for me the most important thing was to spend time and be there with him. The only thing I said to him was that we were going to be ok, and that he had been the best father and grandfather in the world. His big brother lost his wife to cancer 6 months before dad died, and my aunt asked if they had talked? He said we have been married for 40 years, we don't have anything unspoken. I think people are afraid of regrets. You wont regret spending time and holding hands. And I know I will always remember his voice. And if I don't, I will always remember who he was.
Dear Soton4ever - thank you for sharing this lovely story - it brought tears to my eyes - you clearly had a wonderful relationship with your dad & miss him like crazy. My sincere condolences - may he rest in peace. Kindest Regards
Your story shows how incredibly fortunate your dad was to have a daughter like you. His love for you was great right until the end and in my opinion his love continues. God bless you as you continue your life. Keep bringing his love for you into the world. And remember to laugh and have joy. I joke with my daughter too. It’s how we show our love often. God bless you.
What a lovely tribute to your Dad. I'm glad he had had his loving family around him throughout. Well done. Wishing you comfort and peace and strength going forward.
Just marked five years since we lost our dad. Still miss him so much but it’s less acute. The worst is in that time six great grands were born that he would so have enjoyed and who will never know him. He was that fun grandad who played monster and was a big sports guy who taught kids game strategy and how to pitch. Yes its the circle of life and no one lives forever but that doesn’t make it any easier. Hugs to you.
I am so sorry for your loss. I am glad my kids were 15 and 16 when he passed, so they got to know eachother. He loved sports too, we are going to England to see his favourite team in Premier league soon. He and mom was gonna take my son to see them in april, but things changed, so I am going instead.
Southampton 😊 He saw them play in Trondheim, Norway against Rosenborg in 1969, when he was 11. Was a loyal fan since that day. We put his Southampton-shirt on him when he died. Going to be an emotional day when we go to England to see them play.
Everyone remembers the great Alan Shearer. I’ve always been a Leeds fan. Not too many of those outside of Leeds these days! Enjoy the game. Your dad will be there with you. God bless you and your family.
Can't ask for a better memorial than this beautiful account of your journeys. Thanks for sharing and I hope you find peace from his passing and joy to continue on his legacy.
I think I found peace when he did. He looked like he was smiling right after he had died. And the funny thing is he looked like a 20 year old younger version of himself. It went so fast so all that happened to him physically was that he lost some weight. But I don't think I'll ever get used to the fact that he is gone.
We are so glad you are here! How caring and thoughtful of you to post this. I’m amazed at the love, joy and laughter in you and your family! Your Dad sounds like a oneofakind Special Man. I’m so sorry for the loss you and your Mom are dealing with. You are so courageous❤️. Your story is hope infusing and powerful. ((Big hugs)) to you.
I can’t even register that you were so full of extended hope to bring love ❤️ to your beloved father but did proud of you of just the love ,appreciation and admiration you shared and gave to your so everdearing pride of joy. You know which may be revealed just now but in your time you will know he still in here which is in your hair blood smile laughter and most of all companionship humor he gave blessed you with.
Thank you for sharing your moving perspective on chemo and life-extending treatments. It’s a reminder that every journey with cancer is unique, and the choices made are deeply personal. Your dad’s experience highlights the importance of hope and the fight for more time with loved ones, even in the face of aggressive illness. We are grateful for your insights and the strength you displayed.
May your dad’s memory be a source of comfort and inspiration as you navigate this difficult time. My thoughts and prayers are with you and your family.
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