Taking care of "present you"

I don't want to offer anyone false hope, but sometimes you can come back, at least for a while.

I remember being in hospital in fall 2021 when it felt like one domino was falling after another over the first two months: stage-4 cancer diagnosis, paralysed from my ribs down (paraplegia), 10+ hours of emergency spinal surgery, post-op spinal radiation, prolonged digestive-system shutdown (ileus) and I/V feeding, stomach suction tube through my nose, temporary diabetes and insulin shots, serious blood clots (DVT), pneumonia and partial lung collapse (atelectasis), fluid build-up in my back (seroma), and hot flushes etc from starting ADT and Erleada. It was a rare day that I wasn't slid from my hospital bed onto a stretcher and wheeled out for at least one test or scan.

But then they finally decided they had stuff under control enough to move me from a critical-care bed to a bed in the rehab centre, and I started a tough 6-week training regimen of rebuilding my atrophied muscles, kindling my appetite for food again (I'd lost 40 lb), learning to live/cook/maneuver etc from a wheelchair, starting to stand holding parallel bars, etc etc.

So somehow, I made it back. I had a few more smaller health crises after I went home, but gradually I stabilised and got, maybe, 70–80% of my old health and mobility back, which felt like a miracle.

All the firsts — first time back home, first time sharing a bed with my spouse after 3½ months, first time seeing my neighbourhood again (as my spouse pushed me around), first time walking 20 metres outside with a walker (felt like a marathon), first time at a restaurant, first time driving a car, etc — felt like victories.

I see a lot of anger and resentment from forum members here, and I fully understand it. I feel that way sometimes too, and still am adjusting to the fact my cancer will never be cured. But when you've been down there, and then granted a second chance, the primary feeling isn't anger but joy and gratitude.

Low energy sometimes? Hot flushes? Urge incontinence? Sexual dysfunction? Gynecomastia? Bah! I can deal with those, as long as I get to walk down the street on my own two legs again and hear the birds sing for yet another spring. 🐦

Hello! How am I now? And when did I write the above post? This is Koke and I wrote that post on 1/13/24. And all is true and continues to be true. I guess thoughts about prayer and believing is defined by each person. I know how deep I rely on prayer and my trust is in my higher power allows me to handle my cancer in a way that I didn't know was possible. But we all have our own way and my way (which is such a gift) is praying and strongly believing that my God will help me through. I don't think he can save any of us but he can help guide and give us strength and courage. Isn't that all we have? Oh yes, those drugs but other than that?
In Dec/24 my cancer returned back to lymph nodes near my lungs. I have been VERY sick with one 5 day (near death) stay in the hospital with sepsis and the other fighting a battle of pancreatitis (going on month 2) caused by my immunotherapy drug. I really thought I was going to beat this cancer and now I don't think any of us can....but we can buy time.....time to find another drug ..... another treatment .... another way to prolong my life so I can see my (adult) kids again and my 3 grandchildren. That is my goal.
Prayers for all of us. This disease is just shitty....but I believe laughing, crying, being calm and stress free and enjoying moments in every day beats the cancer down. That I believe is true and gives me a basis to start each day. Prayers for all of us to stay healthy, spread smiles, to enjoy daily life and to laugh. Koke

@northoftheborder I too have been there, and been granted a second chance many years ago. (Although for a different disease.)
I was told later that had my hospital admission been delayed by an hour or even less, I would have been dead. My doctor friend told me when I was out of the hospital that he knew of only 3 cases with my disease: 1 died, the other became a vegetable, and I -- I survived and left a normal life.)
When I learned that I have prostate cancer, I was sad but more hopeful than when I had my first major health issue mentioned above. Survival rate prostate cancer is very high, not "1 in 3" as in my previous experience. We can all be really thankful with the treatments available to us.
I am very happy for you, not because of you went through (that's a lot), but because of what you are now -- an inspiration and source of encouragement for those of new in this PCa journey.
Best regards to you & your family.

For me, it was the classic stages of grief, but not necessarily in order and lots of bouncing around: anger (still cringe when I think of some of the things I said to the people who love me), denial, depression (got stuck in this one for a LONG time), bargaining and acceptance. I'm halfway between bargaining and acceptance right now.

But as to your question of taking care of "present me" ... I retired a few weeks ago from a job I really love because I want to start doing some other things. I'm still getting used to finishing those other things in 5-6 hours and then finding something to do for the other 10 that I'm awake.

I have an e-bike but as I've gotten stronger again, I've turned off the pedal assist and just ride it as a normal bike. There's a fantastic trail near me that goes through the woods and if I go around 9 AM most other people are at work and I only see trees, water and animals which is good for my spirit.

I challenged myself to compliment a stranger at least 5 days a week even if it's something simple like "cool t-shirt dude."

I restarted my Spanish lessons. I can read Spanish fairly fluently--a trashy novel is no problem, but I can't read Gabriel Garcia Marquez YET. I made a huge stride where I no longer translate to English in my head. I want to work on speaking and understanding spoken Spanish.

Finally, I had completely stopped drinking alcohol but I really like whiskey so decided that once a week, on Friday (today, YAY!), I will have a glass and savor it with my feet up and the dog on my lap.

I don't want to offer anyone false hope, but sometimes you can come back, at least for a while.

I remember being in hospital in fall 2021 when it felt like one domino was falling after another over the first two months: stage-4 cancer diagnosis, paralysed from my ribs down (paraplegia), 10+ hours of emergency spinal surgery, post-op spinal radiation, prolonged digestive-system shutdown (ileus) and I/V feeding, stomach suction tube through my nose, temporary diabetes and insulin shots, serious blood clots (DVT), pneumonia and partial lung collapse (atelectasis), fluid build-up in my back (seroma), and hot flushes etc from starting ADT and Erleada. It was a rare day that I wasn't slid from my hospital bed onto a stretcher and wheeled out for at least one test or scan.

But then they finally decided they had stuff under control enough to move me from a critical-care bed to a bed in the rehab centre, and I started a tough 6-week training regimen of rebuilding my atrophied muscles, kindling my appetite for food again (I'd lost 40 lb), learning to live/cook/maneuver etc from a wheelchair, starting to stand holding parallel bars, etc etc.

So somehow, I made it back. I had a few more smaller health crises after I went home, but gradually I stabilised and got, maybe, 70–80% of my old health and mobility back, which felt like a miracle.

All the firsts — first time back home, first time sharing a bed with my spouse after 3½ months, first time seeing my neighbourhood again (as my spouse pushed me around), first time walking 20 metres outside with a walker (felt like a marathon), first time at a restaurant, first time driving a car, etc — felt like victories.

I see a lot of anger and resentment from forum members here, and I fully understand it. I feel that way sometimes too, and still am adjusting to the fact my cancer will never be cured. But when you've been down there, and then granted a second chance, the primary feeling isn't anger but joy and gratitude.

Low energy sometimes? Hot flushes? Urge incontinence? Sexual dysfunction? Gynecomastia? Bah! I can deal with those, as long as I get to walk down the street on my own two legs again and hear the birds sing for yet another spring. 🐦

For me, it was the classic stages of grief, but not necessarily in order and lots of bouncing around: anger (still cringe when I think of some of the things I said to the people who love me), denial, depression (got stuck in this one for a LONG time), bargaining and acceptance. I'm halfway between bargaining and acceptance right now.

But as to your question of taking care of "present me" ... I retired a few weeks ago from a job I really love because I want to start doing some other things. I'm still getting used to finishing those other things in 5-6 hours and then finding something to do for the other 10 that I'm awake.

I have an e-bike but as I've gotten stronger again, I've turned off the pedal assist and just ride it as a normal bike. There's a fantastic trail near me that goes through the woods and if I go around 9 AM most other people are at work and I only see trees, water and animals which is good for my spirit.

I challenged myself to compliment a stranger at least 5 days a week even if it's something simple like "cool t-shirt dude."

I restarted my Spanish lessons. I can read Spanish fairly fluently--a trashy novel is no problem, but I can't read Gabriel Garcia Marquez YET. I made a huge stride where I no longer translate to English in my head. I want to work on speaking and understanding spoken Spanish.

Finally, I had completely stopped drinking alcohol but I really like whiskey so decided that once a week, on Friday (today, YAY!), I will have a glass and savor it with my feet up and the dog on my lap.

@northoftheborder Oh my goodness. What a post!!!! I’m so glad you’ve made it back and that you’re sharing your experiences with us. Truly inspirational and helpful. Wishing you many more enjoyable days 🙏

I remember well your comments mid last year when I was wondering whether it was selfish to get puppies while in remission from incurable stage 4 appendix cancer. Now I understand where you got your wise words from.

Thank you for your perspective. My puppies and I have back up plans but we’re loving each day. They’re now 10 months old and wonderful as well as very naughty loving little souls 😊 ❤️‍🩹

I think this is a very charming idea--and I love the idea of "future me" as someone who certainly isn't worrying about me now!
However, I am not that great at living in the moment, so I've devised a kind of compromise. I am living in 3 month periods--that is a season. I let myself have goals and aspirations for a 90 day period, then re-evaluate. It's fun too as I see what the flavor of each season might be--guests, gardening, holidays, tasks. I write it all down in a notebook. And I'm strict! Instead of going on a long riff of "who-knows-how-I'll be-in-April" I just don't plan anything!
Thank you--enjoyed your post.

I left a normal life, I meant to say. (Not "left.")

My daughter and son-in-law's puppy is also 10 months old. I love the little rascal.