I haven't had that conversation with my kids (are people in their 40's still "kids"?) but I have thought about it.
I think your attitude of consideration for your family is good, and I think it's good for you as well as for your family. I also think your son's attitude of focusing on you is good. He too is focused on his family. Neither of you sees himself in a self-centered way.
I don't believe in any kind of afterlife, but I do believe that I am part of something much larger than myself - my family, my community, the human race, the progress of life from bacteria like particles to an advancing intelligence that (hopefully) will achieve greater and greater things in the future. I think that being part of all that is part of what gives meaning to my individual life.
Of course I still want to have a good time, but I want to share that good time with lots of other folks and the sharing is part of what makes the time good.
Your son has said some very sensible things. He is also trying to be realistic with how much time you may have left to enjoy life. He is giving you reassurance that your family will be fine, but also telling you to live your life whilst you can, and I agree with him, because none of us know when our time is up or when things can change and sometimes things change so quickly out of our control. Do things that make you happy and make memories. All the best.
Another angle on the Son's advice is to think of legacy, Allan mentioned this. What if you went all out volunteering for an org that helps folks. And you really enjoy the work? Invent your own legacy work. Could be spending lots of time with grandkids teaching them the values that grandparents have a good handle on. Etc. There's many variations on kick out to do something... Best of luck! Great question.
Conversations like this are vital in my view.I have extensive metastatic disease but I am currently stable and well on anti androgen treatment (Zoladex)and abiraterone and I have had three courses of lutetium PSMA. I live in Australia and have funded the lutetium privately. I send a regular bulletin to all my family and friends about my prognosis when I get new information.
I am very frank and do not filter the facts despite my urge to protect my loved ones from the trauma.
I have an advanced care directive which is a statement of my values so that when it all turns to shit, which it will, my values will be respected if I am in a state that I cannot be communicated with.
I have made videos for all my children (32,3,1,30,17,15) and my siblings and parents who are still alive at age 90 and 86 with messages of love and respect and clarity. about How much they have meant to me and some apologies for episodic appalling behaviour by me. These will be released when I die.
I realise that there are some treatment options coming in the form of combined immunotherapy et cetera which may increase my life expectancy. If this happens I will be exceedingly pleased but I have planned for it not happening.
Being unrealistically "positive" is a toxic state.I think honest clear discussions protect everybody better than attempting to protect everybody. Sounds to me like your son understands this. I am a medico and have looked after a large number of people who have died from all sorts of horribleness. Those that play "the I will be alright if I am positive and super optimistic" game in my view make life very difficult for their families. The strategy of clear and frank disclosure of options and fears et cetera can cause distress and it usually does but nothing like the distress that occurs with avoidant strategies. Your son sounds like a ripper!
Interesting conversation and a needed one for sure. No one wants to appear selfish, but we all have it in us to be selfish, or as some people refer to it as taking care of yourself. In my situation, I do believe I became selfish when Stage 4 was at hand and I was in treatment again. By the way, I hate Lupron as much as I hate to attempt to fix plumbing, but at least plumbing does not spawn other serious health issues, except for the occasional yelling, cussing, and a tool toss across the room. I gave myself a break in trying to fix things that I cannot fix because my skills lie in other areas. Of course one of those things was plumbing.
Changing roles from being the guy who tries to fix everything went by the wayside. I was not good at it anyway. Of course when I did that, my "manhood" took a hit, but not as much as the Lupron hit me in that area!
Then one fall day in 2017, I found out, with the help of a PET scan, that I did not have the bone mets that led to the advanced status of my disease, but there was still a spot in my prostate. I had seeds implanted in my prostate and the PSA went from 5.85 to .447 in six months, pretty much indicating that it had been, I hope, contained to the prostate. So what do I do now, go back to being the guy who tries to fix everything, unsuccessfully? Probably not, I still have other health problems, some caused and amplified by Lupron, and remember I was not good at it.
But the fact of the matter was that I was not being selfish, I only thought I was. I had limitations that I should have recognized decades ago, it would have saved much stress and frustration. The other fact was that as men and women, we do not recognize our limitations in the first place; we were acting in upholding an image, meeting other people's expectations, or society's expectations. So Wgarbo, give yourself a break, be who you really are and want to be, not the expectation of what others, society, or tradition wants you to be. Be happy, take care of yourself, enjoy all that you have it will likely save you much stress, and we all know how stress affects our health. Your family will love you for it.
After this conversation with a friend who was heading to Sturgis, so we decided to go. Unfortunately I was hit by a car while riding in Feb. and now cannot go.
Happened upon an old post of yours while doing some exploring here.... Are you saying that you were on Lupron but stopped after you had the seed implantation?? How did it happen that you were classified as stage 4 to begin with??.... Are you still OFF the Lupron... if you did go off it at all.... Psa still stable??
Well I had bone scans and CT’s that identified a metastasis on one rib. As it turned out it was not a metastasis after a more accurate CT and MRI. It was an old injury.
I find in the end all that matters is time spent with family and loved ones. In the end it helps to have really good recliner,that you may find you like sleeping in more than a bed, the bed can aggravate bone pain in pelvic area and somehow the recliner bypasses that. I am thinking of adding to the page whats it like to die from this disease, as I now have experience in this field, its worth it to keep living, I get 2 transfusions a week 7 minutes from home, its about a 2 to 3 hour deal, and I keep going. Amazingly my WBC stay good. Today platelets 27 and hgb8.2, WBC 4.5 I have been untreated since psa 156 in August when I stopped all treatment, I am enjoying life with Family every day, I now use a walker. Super happy to be alive after 150 months with GS10,w widesspead metastatic disease to bone and lymph ,bpa 148, psa nadir 3.0 at 18 months.
Absolutely! I retired 2 years after being DX with stage 4 G9 PCa back in 2014. Work didn't mean a whole lot any more, things that used to be important became trivial and I wasn't going to work till I die.
Nowadays my wife and I spend our time enjoying each other and visit the beach as often as we can. We both realize that my time is limited - I'm coming up on my 5 yr DX anniversary. I'm in a good spot right now regarding my disease, the SE's of ADT get tougher the longer I'm on it and I've had to adjust but we are still able to travel and go fishing quite a bit (fishing is a passion). We realize everything can change with the next blood test, and yes there are new treatments available that will probably allow me to keep kicking that can down the road but they won't be easy, and I probably won't be able to do what I can do today.
So I try to enjoy each day, enjoy my family, enjoy doing the things I love.
I had my metastatic diagnosis at 43. I'm 49 now and began showing hormone resistance this year. I'm still trying to get a frank response about by situation from my mother and 3 siblings, who give me not much more than tacit acknowledgement. Their know nothing attitude really upsets me and leaves me feeling abandoned. Luckily my wife and friends are all willing to 'go there' with me. So I've been having that conversation for years now with the people who are able, and it is a part of the personal growth I have been experiencing as a result of facing up to the reality of my condition. I have much to be grateful for because of this.
In some ways I have done more, and taken more risks. In other ways I've realized that I don't need to do more. I have been living a rich and full life, and the call of cancer has given me a deeper appreciation for what I'm already doing. I have been savouring life more deeply without needing to add much to the mix... though I am willing to indulge myself and others more... Stopping to smell the flowers as it were. Conversations like you describe are one of the things I enjoy because I feel connected to the people who share them with me, and that our lives are enhanced by having then.
I'm really happy to hear that your son can have this conversation with you. Very fortunate for you, and something to both appreciate and be proud of!
Yes, my family is totally behind the same process, I set up all the financial stuff , fixed everything around the house, bought her a new vehicle, bought me a new Utv Razor and we are spending as much time together as we can. Enjoy your time. Do the bucket list, love as much as you can. Fight the good Fight 🙏🙏🙏🙏
My son and two step-sons my pride and joy. My daughter in-laws and grandkids a true gift of life. I was diagnosed with PC March 2016. My son in July of 2016 sat with me and said lets order the car you have always wanted. He is a manager with BMW/MINI. 3 months later the car I choose (MINI CLubman All4) was sitting here in the states in my garage . His and my daughter in-laws gift to me. I was to take it, use it, and "drive it like you stole it". I have been on 2 trips this year alone. Total 6000 miles. One trip I was at the oceans here in California, then to the Grand Canyon. Walked the same field I held hands with my first girlfriend!! Sat and reflected on my own about how lucky I've been. Last night I asked about Christmas gifts for my grandkids. His response was why don't we "do Hawaii". In between me now fighting PC and questions of "after I'm gone" legal issues we discuss family and life. He knows I want to walk on the beach with him and my grandkids.
My father died (not of PC) when I was 34. That was 30 years ago last month. My son was 2. He didn't know his grandfather. Now ironically I'm 64 and praying I make it to HIS 34th. I know he so wants my younger grandkids to remember me. I don't think my youngest now 2 will. The beauty of him (the 2 year old) is he is named after both my father and me.
Our kids are amazing. Hopefully we have all pointed them in the right direction. I have tears at night sometimes thinking about not being here . I think I smile more knowing that i'm blessed and when I'm gone I made a difference. I was loved. My sons incredible men and will do well without me....
You , like so many of us are blessed to have an incredible family .
Well, 11 years ago I started my journey with this horrible disease and last month my Doctor said I have no more Prostate cancer! So live it up and never give up!
to Wgarbo: Next time let your son do the driving (geez 3 friggin hours). As I tell everyone, "Want a good time? Get a good watch!." JUST LAUGH, LAUGH AND MORE LAUGHTER.
Good Luck, Good Health and Good Humor.
j-o-h-n Thursday 11/01/2018 6:35 PM EDT
J-o-h-n,
This is weird-- I collect watches.
Also, my son and I both _want_ to drive, meaning the loser is shotgun.
I tell my wife, grown children( natural an adopted), siblings an mom everything I find out during any appointment visit. Mom went through it with dad(passed Aug2002 from another type of cancer). I discuss with coworkers, findings about current and new research I read about. In some areas, Men should learn from women to openly discuss their medical issues. Someone might be having stress an anxiety over THEIR personal or a family members issue an need to talk it over with someone other than Doctors an family thats pressuring them to make quick, rash decision.
Oh yes, we joke openly about "playing the cancer card."
Example: we need a new car. I am a good and thoughtful wife, so I said "you care more about cars, I'll take your old one and you get the new one." Husband immediately starts looking for a NEW one. We've never bought a new car. We're not those kind of people. We buy used and run it into the ground.
When I commented to my sister that he's playing the cancer card, she said "yes, and you need to let him."
I'm going through a bit a life restructuring right now to help my wife, daughter, and grandson have a good, steady life when that time comes. Those thoughts are with me everyday. There are still some sights I'd like to see, of course. But I suppose it's kind of like when Moses led his people to the Promised Land. He just wasn't allowed to enter. And I'm good with that.
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Dad with Advanced PCA :(
Advanced recurrent PCa, rising PSA, 2 negative PSMA PET Scans
Chemo again -- after all other treatments for advance PCa
18 vs 24 months of ADT + Zytiga after locally advanced PCa? 
