Having advanced prostate cancer, one of the hardest things for me to handle is the stolen future. I had a clear plan for my wife and me: I would sell my company at age 50, and we would retire early to spend our future doing what we love - doing nothing and everything together, making dinner over a glass of wine (my favorite activity that I never tire of), working in our garden, tending to our home and travel. Just enjoying life together with my wife, who is also my best friend and the love of my life. Us growing old together was a given.
But.
Two and a half years ago, on my 50th birthday, I was diagnosed with stage 4 cancer, and all of a sudden, the future changed. Growing old together with my wife isn't a given anymore; instead, it's very likely that I won't live to be old and will leave my wife early. The future I was so sure of and so very proud of was stolen and replaced with fear, guilt, and sadness: fear of having the rest of my life crippled by treatment side effects and dying early, missing out on life with my wife; guilt for possibly leaving my wife early and not growing old together as we had promised each other; and sadness from suddenly having a future shining less.
Talking with other people about this I often get told a version of ”anyone can get hit by a bus tomorrow” as if that is the same thing. But it isn’t. At all.
I guess it's hard for people who are not terminally ill to truly understand the situation we are in. It's important to stay positive, live in the moment, and hope for the best - and I do (I’m a pretty positive guy anyway), but it’s so very unfair.
I want my future back.
Written by
Mike1971
To view profiles and participate in discussions please or .
181 Replies
•
I pretty much thought the same when I was DX with a PSA of 847, numerous Mets, on and on. Heck, I was planning my military funeral. Now, nearly 9 years later, my PSA is <.01, my scans are clean and most important, I'm having the time of my life. Furthermore, I see many more years in my future. You have a great future, simply adjust to the new you. Best of luck, Marshall.
I did a few diet adjustments, but the single most important thing I have done (IMO) is listened to my MO. I believe strongly in following the SOC. Best, Marshall.
Thanks...yes !! especially an MO who has a LARGE PCa practice!!! you found one obviously!! any discussion of BAT for you, or intermittent ADT by itself with no T boost shots?
I hear you. I've been spending the last year planning our retirement, maximizing savings, and it is a punch in the gut.
My plan is to be as informed as possible on treatments to make the best decisions but not dwell on the downsides and projected mortality numbers.
I will enjoy every day I have left and continue to optimize the time I have left to live life to the fullest. At some point in life there starts the losses and the steady decline to death. It is inevitable for everyone. We can mourn the losses or we can adapt to them and seek joy in what we have left.
Wise words ImDD. I have pretty much the same plan, and I’ve always been pretty good at enjoying life - but I still struggle with accepting my new reality every now and then.
Mike- I hear your passion. We too had made all those plans and of course life had other plans. About 10 years ago my sister in-law went through her personal health problems with her husband being diagnosed with ALS (the kind that has a short life expectancy - different than the one Stephen Hawking had). Needless to say she also had these same responses to her situation. But with family and faith she found the courage to carry on. I have a head start on some of what to expect for myself and my hubby. She has been very helpful and provides a good example for me to follow. I wish you and your wife the best. Make some memories with her while you can. Hold on to the happy and dump the rest.
Mike, the only thing getting me through my APCa path is to remember that the day of my diagnosis was the first day of the rest of my life. Make the most of it, take care of yourself, and be thankful for each dawn.
I received the Stage 4, short life expectancy, information 1 month before my planned retirement, and in the middle of the pandemic. I was rocked, and I still am periodically.
After a few days though I began to focus on having the best damn life I could given the circumstances. I reevaluated my plans, and began really focusing on taking time to enjoy each day. Since then I have had some struggles (mental SEs from ADT, family issues, etc), but taking stock today, my life is better than it was pre diagnosis.
My marriage has never been better. My lovely wife and I enjoy doing nothing and everything together; we make dinner together; we read and travel, putter and tend to our home; and have time for long talks and sweet times together just cuddling and flirting. We hope to grow even older together, and so far we are beating the odds.
For me the solution has been to stop and enjoy whatever is happening at the time. Right now I am sitting with a warm comforter around me, drinking tea, chatting with friends on HU, peeking up my wife's dress while she sits across from me and reads, and thinking about leading her into the bedroom. Whoops, gotta go, looks like time for a naked snuggle...
Planned on retiring at 58, diagnosed at 54 so retired and now all we do is travel with friends, 7 years 5 months with disease has opened up a world of adventure for us. Just started a little earlier than we expected. Wouldn't change my life for anything!
Hoping to have a story like this. Is there such a thing as quad therapy? I am starting triplet soon but RO also wants to do radiation. I feel like this is a good thing right?
You still have a future... It's just altered of what you had planned... You can actually have a more enhanced future, depending on how you view it...
In my case, that's what I found. The disease is treatable and I'm determined to live a long happy life with my wife despite. Sounds nuts but sometimes I feel grateful for it because I'm appreciating aspects of life I never paid attention prior... Blessings to you brother...
Just read your bio. Get a PSMA Pet/CT as long as you are not under ADT. If you have mets, you can maybe radiate them and go back to ADT. By this you continue being the pilot of your life and plan your future with your wife. All the best!
I wouldn’t get too upset at this stage . Yea this stuff is da chits but you may live years and years longer than you expect. A table full of doctors told myself and my wife that I needed to enter hospice immediately, and here it is 60 months later and I’m still here ( to their amazement). , this month is my 5 year anniversary.
The only thing I would say is …. Go out and do those QOL things now because as time passes you may become less and less able to do anything. ( either from the cancer or treatment SEs or a combination of both ). Time passes fast , it’s gone before you know it. Today you can hop out of bed, walk and “ do things “ . Two or three years from now you might need help out of bed and need a wheeled transport chair for mobility. Point being , this is the “ sweet spot “ times for you …. Get yourself up and out and do those QOL bucket list items before it gets too far down the road.
I’ve lasted 5 years but it’s been rather brutal. Evidently im super sensitive to Lupron Xtandi Zometa ADT treatment ….. but that comes with a strong downside for me. ADT has put me in a wheelchair and damaged my body dramatically. In my meeting with my new Kaiser oncologist ( about 3 weeks ago ) , she kept flipping thru my test records and scan film library shaking her head. told me three different times that I’m the luckiest aPCa patient she has seen. ( that I’m still alive ). It’s not something that you really want to hear. Thoughts of hospice are never far away now , except I’m not convinced it would be any better in the later stages. I truly hope no one has to be or is in a “ club “ of people like me, in my condition. Yayahahahaya yayahahahaya
This is why I said Mike1971 should do his QOL bucket list early … later on he might end up like me.
Yes, I understand. Hubby went from being able to walk and such and now can’t go anywhere without the rollator walker. Just got him a lift assist recliner. We were kinda expecting things to go downhill because of his back problems so we had the house built to accommodate wheelchairs. The other house was built in 1792 would not want to ruin historic house. Besides the bank owns it now 🥹 that’s why I mentioned to Mike to make memories now while he was able.
this dang disease can be really rough on a lot of us guys , guess it’s rough on everyone eventually. I use office chairs in the house , they fit thru all the doorways and I have a wheeled chair too. New wheel sets on those from Amazon make them glide like butter. I have a etrike and lift on my truck to go out on bike lanes and hike and bike trails. It also works for driving up to local shopping centers ( in bike lanes at 20mph ) parks, by myself … and can be switched to drive slow up and down isles in super markets and drug stores like a mobility cart. It makes me feel like im still getting out by myself and doing things. Being able to enjoy hike and bike trails / outdoors - nature , on your own still, is pure bliss when you can’t walk 15’.
I know your husband really appreciates the way you help and care for him. I know I do my wife. I can’t imagine how this would be without her. Clearly you are here advocating for him and you’re there by his side helping make his life better … thank goodness for our wives / significant others that will stand by with us. You see here that some significant others can’t take the emotional load / strain of this aPCa life.
Too true. Some of us are just made up of sterner stuff that or maybe we just have had to deal with rough patches before. Possibly had good examples to follow as kids.
I had cushy job when I was younger- same building as my hubby worked at. I took visitors around the facility so they would not get lost. Sweet job no real pressure. Great pay, weekend off and home by 6pm.
Anyway one of my coworkers had epilepsy. I found out after I left the job. The one of the reasons they took the job was because I was there and they knew I would not freak out if they had a seizure. It made them feel safe.
You sound like a both very strong and compassionate sort of person , traits much needed dealing with this hellish situation. Thank goodness you have that to rely on.
Tell me more about the E-trike. I looked at them a while ago thinking I might need one some day. My bone mets are increasing and getting into spine so mobility might be a future issue. Hard to imagine not riding my e assist bike. We have a Sprinter van that we use little especially in the winter when there can be heavy snow. The trike should fit easily in the van and probably in the 4wd pickup that is needed for the winter. It would sure be fun to zip around Costco in my E-trike with my service dog
One problem is the long lead time to get one. I don't want to buy one until I really need one. Did you buy one early?
My etrike looks like a moped from the front and a mobility cart from the rear. It goes 20 mph and has road legal lights , horn etc. goes about 30 miles or 3.5 hours before needing recharging it says in the book. ( more like 14-18 yayahahahaya driven wot ) . It has switches that change performance from bike lane to mobility cart. In California it’s legal on all hike and bike lanes / trails and in stores , malls, etc. an etrike can change your life if your mobility becomes challenged.
Nothing beats driving down the incredible “ pacific coast h&b trail in Monterey on a etrike . It’s a world class experience. Being able to zoom up to a local shopping center in the bike lanes at ( say 10-12 mph to conserve batteries ) then throw a couple switches and it’s a slow motion mobility cart in a store.
I have a Bruno lift on the back of my truck but indoor storage for transportation would be much more desirable.
In your truck or your van you will need a professional lift to stow it. There are great swing out cable lifts for the truck bed that are extremely easy for anyone to use. They can be operated from the drivers seat with a teathered remote. For the van you’d want a Hoyer style lift , a small elevator lift for rear or side doors. You can save money with a small winch inside the van and a set of ramps.
There are zillions of them on Amazon ( search EWheels scooters ) it takes about 5 days to ship to you already assembled.
pretty kewl …. But haven’t had to worry about the bullets part since my biker days yayahahahaya. One thing I think about this group is that how nice it is for all the Croakers like me. It’s a lot of camaraderie from members like you that make it so friendly and welcoming for everyone else. There are a whole host of really kewl people here all sharing this unfortunate experience together and numbers more lurking quietly. It’s people like mike1971 that makes such a great and popular social post with nearly 100 replies ……and counting. It’s good medicine.
I actually love reggae and even have a full cultivated reggae play list on Pandora. Cannabis and reggae are kinda synonymous yayaha yayahahahaya.
Oh yea , I love music like cajun zydeco and Tex - Mex Tejano. . I spent a little time at Lake Pontchartrain and lived in Texas over a decade. I liked Stevie, Ray’s brother’s take on zydeco as well. Nudd’in better than a table full of hot crayfish boil and some Dos Equis yayaya.
i was thinking of something else Mountain Trike it allows you to provide some or all of the power with your arms. This is the one that has long lead time etc. Since my shoulder is one of the worst places for bone mets maybe using my arms is not that great of an idea just have to wait and see if i need anything like this or maybe just die suddenly and not worry about it good that it is just 5 days so i don't have to plan months in advance but if my arms are good i really would like the mountain trike. looks like yours is about $3k? the mountain is more like $10 or $12k i have a hydraulic hoist in my van which i could motorize. have a 12 volt hydraulic power pack i have been saving for maybe 15 years. that is why i never throw anything out, well besides garbage.
It’s good to keep in mind the two kinds ( configurations) of trike construction. One is two wheels in back, … the other is setting between two wheels in front . If you’ve ever owned a Harley trike or extended front end hog, you know that “ trikes “ ( this kind ) are inherently tipsy on rough ground. They fall over just looking at them yayahahahaya. The trouble people get into with a standard medical three wheel mobility cart is another example …. the way they tip over frequently going over rough spots or curbs…. and especially if associated with slight turns. Even on my so called off-road etrike ( taller tires and slightly higher suspension ) …. I’ve nearly nosedived dozens of times when riding over on the rough AG orchard roads. Sitting between two front wheels trikes are way more stable in turns with a flat wide leading plane but they are front leaning - heavy and most have a handle out the back for someone to help them a little in off road conditions.
You’ll need - want a gear shifting drive as well for off-road. My trike is 8/10 of a horsepower with no gearing, it struggles up even the most modest inclines. It needs to be designed differently for that kind of use. So , guess I’m saying that there are zillions of designs out there , for many of applications . probably giving the model you want an exhaustive test in the actual conditions you will be in is very important. Don’t necessarily listen to the fast talking salesmen. Yayahahahaya yayahahahaya
I had no idea there were so many choices. I live in the mountains and my driveway is very very steep. It is 1.5 miles long and I ride up to get the mail 6 days a week on my e assist mountain bike. I can still get by with the medium assist setting. I like the idea of using my body for partial powering mainly to get exercise. However I have no idea what (if anything) will go first. I have lesions that are a little painful in both my shoulder and lower back and upper spine. Maybe I will never need a trike maintaining mobility until I die. But I want to plan for the possibility. I can check your profile, but how did you get to need mobility assistance? This is the trike I am thinking about mountaintrike.com/us/produc... They used to have more info on the site including prices but not now. I think the one i wanted was around $10 or $12K
on the etrike in your link: that trike looks like it will fold and store easily. It’s well designed looking dealing with the side tipsy issues pretty well . Plus if you panic stop, it’ll want to pitch over forward and it has a pair of small wheels in front to stop it from flipping over forward. Kinda like the two wheels often seen on the back that stop it from wheelies. It’s only got a 250 watt motor, that’s kinda whimpy , even a 750-1200 watt motor gets kinda tame after you drive for a while. Definitely, you’d want to take this etrike out to your house and see if it is capable of navigating your mountain driveway. I suspect this model w/ 250 motor might not suit your needs. A bigger motor and enhanced battery would work wonders on it.
As for me, I was DXed real late and I have Mets and met caused deformities , quite literally, on every bone in my body. A lot of lower back disc damage , left knee 3X normal sized ( very painful) and right side 2X etc. couple fingers on right hand don’t work , joints destroyed, painful rams horn bone deformities on pelvic. And low spine bones. This is the highlights on bones yayahahahaya. I am very sensitive to Lupron Xtandi allowing it to work very well in me … however ( yayahahahaya ) because of that I experience very severe side effects in the process. My long muscles from chest to feet are stiff like cardboard. I have to walk hunched over, it’s too painful to stand up straight . I can only shuffle my legs due to muscle issues too. It just takes 10-15 steps for me to be gasping for breath, chest heaving, turning red, trying to breathe, hurting everywhere. In that 10-15 steps my bp will shoot up to 220-110, my pulse up to 175. My ekg looks like a “ etch a sketch “ , leaving me susceptible for heart attacks and strokes. All caused by my ADT treatment. and frankly , those are just some of the high points yayahahahaya. It’s no biggie, I’ve gotten adjusted to all that, and deal with it pretty good, but it can get tough sometimes.
thanks brother ….. my experience, so far, seems to be atypical. Most guys don’t experience what I am, and the ones that start to, often just quit that ADT and / or switch to a different med. people ask me why I go on like this and not try something else. The main reason is because it’s working. Yayahahahaya. Don’t fix it if it's working
Hopefully, you will never have to do this. It’s a good example of the blessing/ curse thing. It’s both.
I appreciate the nice thoughts , dunno if I’d go that far but I’m a kinda glass half full type guy plus I have a very strong sense of survival. I’m a good problem solver and I like to share solutions to common problems, like mobility for example
, so others can live a bit better too. This stuff can drag about anyone down … it even gets to me occasionally but not for long. Yayahahaha yayahahaha. Not today … not happening. Yayahahaha. 😂😂😂
After being diagnosed stage 4 a couple of months ago, I understand you (I am 50). Physically I am very fit and strong. And still I am technically dying.
Not philosophically as in “the minute we are born we start to die”, but literally. I don’t remember which philosopher said “think as if you were never gonna die but live as if you were gonna die tomorrow”. We are somehow denied the first part now. Which is terrifying and exactly what people telling you that anyone could die in any given moment do not understand.
This said, I am more grateful for every day I am living without symptoms, even if still confused about my future. I had to give up a PhD in AI and Robotics because I simply don’t have the focus that is needed to carry it on. Had to start planning things to make things easier on my partner (soon to be wife). All sad things but at least I have the chance to fix them. And I appreciate way more the simple things in life. Plus I still have hope. I am getting a triplet therapy that it seems to be working very well for now (had my second chemo yesterday and today I worked out heavily with weights as usual). As ex researcher I started doing what I used to do well….I researched. And I must say that I have the feeling that there are like 3-4 new products or combined therapies per year coming out for advanced prostate cancer. Chances of survival are increasing yearly and quite exponentially. AI is helping A LOT, it takes only few weeks to design a new drug now, not years, and wait for quantum computers and you will see another jump forward, as training of such systems will become blazing fast (hence less expensive as well).
We are suspended between the acceptance of having to die relatively soon and the hope to live for many years in spite of cancer which could become a chronic disease by then, like HIV nowadays. I am trying to live day by day and plan realistically in advance according to current statistics but also knowing that statistics don’t apply to individuals but to big samples of people and I am an individual.
Ok I am just ranting now (it’s quite late in Italy) I don’t know if I have cheered you up or make you more depressed actually!!
Anyway, fight on!
P.S I am also a musician (classical guitar mainly since I was, 10 but I have also studied electric) now I stopped postponing my “I will get back to practice seriously” and restarted playing and also going to finish some is my own compositions. If you have some hobby you stopped and you would love to restart with…now is the time! It will help your spirit!
"Physically I am very fit and strong. And still I am technically dying. Not philosophically as in “the minute I we are born we start to die”, but literally. Which is terrifying and exactly what people telling you that anyone could die in any given moment do [cannot] not understand."
I found your post encouraging, keep it up. I am spending more time on my hobbies that give me joy and less on work and its frustrations but I do like to solve puzzles, just not people puzzles.
Well, math puzzles work well for me to keep my mind focused and to relax. It’s like turning off my conscious part, they work even better than music sometimes because I want (or I wish) to be “perfect” when I play and it can be frustrating sometimes. My old drummer is trying to get me to create a new band with him so we can both relax (his wife is also stage 4) but I am not sure I would be so relaxed! 😂😂😂
I use computer programming to keep me distracted. There is always a problem to solve. My latest is music related. There is a program that converts solo piano recordings to MIDI files that I can play on my concert grand player piano. The results are amazing but there are significant problems with certain details. I have spend a couple of months writing a program that largely fixes these problems automatically. I have amazing music for my piano as a result and am sharing the work with others. Makes me feel good about the time I am "wasting" on the computer
i just put the whole mess in a zip on my server. Have not checked the link myself. It includes the program some documentation and my fixer program. spencerserolls.com/A2M.zip
I will check it from my computer, I am on the phone right now. I used to manipulate music xml files in my project to extract information from symbolic music…man, it seems like 100 years ago. But between my job as web/software developer (but in the past years more project management) and my research, I re-discovered the pleasure of composing and playing the old way. Tomorrow my super toy amplifier will hopefully reach me!
I totally get it. You were only 50 at DX. That is just not right. The good thing is, you are young enough to fight this crap and may live long enough to find a cure or a remission that will last for life. I was 64 at DX and had retired two months before. I had plans, like you, to spend my time with my wife doing whatever. I built our dream house starting a few months after DX. At least I have that going for me.... I am 69 now and my attitude is that I have lived long enough that if I went tomorrow, it's not too bad. My biggest problem is leaving my wife. But I'm still here and hope to be for a while so, as the song says, don't let it bring you down!
don't just say it do it brother. Have you started an exercise program yet? Woking on or already on a healthy diet? I was DX'd @ 57. I'm 66 now and have two cancers. There is no give up in me. There was when I was first diagnosed. I of course quit working. I kept asking the docs how long I have left. I was actually getting my affairs in order @ 57.
So expect things will change. Start with changing your own attitude, whatever it may be. Set goals. Actionable goals. Do everything you can do to better your health as though you were planning for some competition. Start small and never ever stop.
Listen to your docs. Ask questions of him/her and ask them here on this site. Always prepare a list of questions for your doc ahead of each visit. If they allow, send them medical messages telling them the questions you will have when you arrive. This is a huge time saver for both of you and it helps them prepare. I can't emphasize this enough. Medical messaging is now (thankfully) billable to insurance so most docs like it.
Learn all you can about your disease, specifically your variant, and the best way to treat it. It is highly complex. Do your best to get to the level of education your oncologist has. Read Pub Med. Tall Allen has a great site.
Take care of yourself and more importantly, take care of your wife. The relationship will change. Mine changed for the better and I thought it was great before I got sick.
If praying is your thing, do it. Meditate. It matters. Breathe. You're going to be here awhile.
Bring on the good energy. As the old song goes, accentuate the positive, eliminate the negative, latch on the the affirmative and don't mess with mister in between.
Yes, I’ve got a small gym at home and exercise 5-6 times per week. I kind of like to do some things a little different, so I recently stopped eating vegetarian after 30 years (I lost 55 lbs during ADT which I wanted to gain back).
I do ask my doctor any questions I have. We text each others every now and then, and I’m learning about PC every day (from this site as well).
I take care of myself and my wife, and our relationship has improved as well And I do meditate.
Thank you very much for your advice - I appreciate it a lot.
Mike, I feel for you; the anger and the feelings of unfairness have to be wrestled with. I'm 20 years older than you, so I'm not having to deal with the abrupt change in plans that you are having to deal with. I thought I was dealing with the idea of my own mortality just fine. When I got the shock of a new diagnosis, I realized that I hadn't really been on top of it. I could no longer be vague-- I now had a timeline.
There are some original ideas that I had in my thirties, which I've struggled to make clear. I now need to get busy on them. The thought is very clear: "When I go, these ideas disappear with me.". That's not what I want to happen!
I thought that since I did a physical job, that I was in good shape. Apparently it wasn't true, because once I started doing simple exercises daily, a lot of my own side effects diminished, or went away. I note that because at 52, you're probably still in good shape. But you may be helped by stepping up your exercise program, too.
I've started using my old exercise bike again, although I last using it in 2017, sitting there in my living room collecting dust, when I had a seizure when I was on my own I have lived by myself for twenty years, I fell onto the bike and shattered at least five ribs, so a bit wary, what the hell I'm terminal🙄 so I set myself an exercise routine, helped to lose weight, it has actually helped, a sense of well being👌
Mike,I'm going to do my best at staying around long enough so my grandkids (3 yrs old and one coming next month) actually have fond memories of me. It's what drives me everyday to be positive and happy to have the chance to do so. I hope you can see how the passions you've expressed affect those around you; we ultimately can only leave memories behind, so make great ones. All the best,
Yes to get the 'diagnosis' you are terminally ill, feeling like the bottom of my world has fallen out, I have had epilepsy 50 years had over 400 seizures thought I was indestructible, always knew inwardly something like this would happen, I have been disabled all my life, but aged 65 thought I could enjoy retirement, but told due to double seizure, broken skull, irreparable brain damage, one more probably my last, sharp intake of breath! Ironically found when I had reactions to AZ vaccine, regular CT scan! What more could happen, diagnosis for PC, it did, "we caught you early", sorting out legal affairs, wills, finance etc, pure gloom, the hormone injections caused serious life threatening rib structure "can't do anymore for you", medical friends now agree, probably never had cancer in the first place🙄 another condition, lay it on thick, diabetes 2 suddenly realised my weight had dropped dramatically, blood sugar acceptable, cholesterol What cholesterol? all the extra medication etc, [last 3 years, lost 2 1/2 stone], probably off the diabetes 2 medication next month after three years, last three years not the best period in my life but taking it 'slowly' with the skull injury, no running anywhere🤞 even a book I have been writing 14 years, now got a ghost-writer👻🤫 slowly but surely coming out of my trench👍 I'm a survivor, so are you,😁 all the best👌
Hi Mike, I felt like you at first, anger focused on the beast actually helps. I wrote a post on here recently because I've now reached 10 years. It was called " Some Encouragement " I was amazed at the responses, how we all share the same determination.
You will too, I wish you all the best in your fight Brother.
Yes I think we all felt those stolen years. But strangely, maybe because I accepted well my disease, I only feel now the spared years or my survival years since diagnostic.
I was 49 when I was given my 2 year prognosis, PSA 342, G9 spread . My terminology was that cancer took away my ability to dream . Dreams of seeing kids grow up , holidays, retirement etc just like you .
I had 3 epiphanies 1) the day after my first chemo I got up feeling rubbish and thought I can be a victim and waste my life being sorry for myself , scared and sad or I take control of every day and make it the best I can .
2) I saw written on the pavement in chalk in London , UK “you only have 2 lives and the second one starts when you realise that you only have 1”. We all had plans for that second life, I feel gifted that I know it’s now as others “fritter and waste their hours in an offhand way “ (Pink Floyd , time ) .
3) I was out running the year after my diagnosis and I heard a song by Julian Lennon (Johns son) , called Saltwater , it’s a lovely song but 2 lines from the end he sings “What will I think of me the day that I die”.
That was it , I realised on my death bed, whenever that may be , I want to be proud of my life , never have any shame or regrets having being nice to others , good to me and tried to make a difference. We all need a Swanee of purpose and worth or we have nothing .
It made me write my book “Dead Man Running” as since diagnosis I have run over 15,000 miles in the toughest ultramarathons and raised over £1m for charity . Neither my doctor or I would have believed that 9 years ago. My PSA has been stable between 0-11 and 0-25 in that time and I remain 7 years on Zytega .
Make the most of today , cross tomorrows bridges tomorrow for better or worse.
Nothing special but I have come to realise that every day is a gift .
Imagine you are given a present every day but you don’t open it and you stack years of them in a cupboard. One day you think , I will open those gifts now because I need a lift .
Unfortunately, the gifts like days are perishable so all the gifts have been wasted . That’s what people do with their lives . I feel I am lucky to have been diagnosed in some respects and I k ow how important every day is ! Pity those who waste their lives from ignorance .
15 years so far. Our long term goal has been reduced to hope I will die with PCA not from PCA. Our planning window is generally in the 6 month range.
I’m 75 and using my Lupron vacation to get a new knee. PT going well. Will hit the road again after Xmas. That’s the extent of our plans. This group has helped steer our life together since the first biochemical recurrence
It’s been a difficult journey but she has been by my side and that’s made it a first class adventure.
Mike. I totally get how you feel. I was diagnosed age 56 pretty tough to take. Even tougher was the biochemical reocurrence post my surgery and following salvage radiotherapy. The reoccurrences hit me harder than the diagnosis. But you must stay positive both for yourself and your wife who I realised was suffering more than I was . So I have adapted my diet boosted my exercise and have carefully added supplements which may or may not help. I also had psychological help which really helped me concentrate on the positive and maximising the time I have left. I am coming up to 8 and half years post diagnosis and we have done a lot. I feel I owe it to my wife who is my best friend to give it my best shot and I am still here. Lol. Yes from time to time I do regret that I won’t live long like my father who is over 90 but then I say to myself move on and concentrate on what you are going to do today and next week and I remind myself that I have been very fortunate so far and that many others have not been so fortunate. Hope that helps and I wish you and your wife all the very best
GreenStreet, I agree we must stay positive, and that our wive’s situation in many ways are worse than ours. Concentrating on today and next week is a good one - thank you!
It is from diagnosis to the end I had 3 years with my boo the last 6 months were the hardest it’s our wedding anniversary on the 6 th November and 5 years since he passed on the 20 January just 13days before his birthday and I still miss him every single day xx
Mike, the feeling is so hard to explain and as you said if your not terminal you just probably don’t understand. Diagnosed on my 66th birthday, stage 4 prostate/bone cancer. 50/50 chance of 5 years 😢. Where to start or stop , I too had promised to grow old with my wife, sell 5he business and live the good life. Now 7 years later 😂. It’s so hard to stay positive about tomorrow as I know the future is getting shorter every day. Keep up the positive effort there warrior ,give your loved one the best every day ❤️🙏👍
Well said. I understand. I was diagnosed at 42 in 2015. Honestly, at that time I hadn't really begun to think about retirement and my end life plan. And I still haven't. I have always really enjoyed life, and while there are moments of sorrow, I generally feel really great about my life and reality. I'm still working and have no plans to stop now. Currently, I'm on Zytiga, and I hope it will keep the cancer at bay. Someone asked my the other day why don't I quit.... and I'm sure someday I'll have to. But, I enjoy my work (I'm a professor -- coastal geologist/ oceanographer). I teach and travel studying the world and working with interesting folks. Of course, we need the income too.I continue to live my dream, happily married with two girls. I really hope I get to see them graduate college and get married, but in the mean time I'm going to enjoy the shit out of life. I sometimes look at other folks who are seemingly going through life without passion, maybe waiting to retirement to enjoy it. That's unfortunate. As others have noted, cancer really helps put perspective on your life, and in a way, it has helped/ forced me to suck the marrow out of life even more now. So I sometimes explain to folks that it's a blessing -- to know that your time is limited and you must appreciate it all.
We’ve run a marathon together since then, and multiple 5K’s: we’ve travelled to Ireland, and we regularly enjoy kayaking and paddle boarding on our lake. When we’re not here, we spend precious time at our farmhouse in northern Michigan. We hike the dunes there and stroll the streets of sweet small towns like Suttons Bay and Fishtown. We enjoy time with our 7 kids, 10 grands and 1 great.
We often cook together, but more often than not, I am the beneficiary of a meal prepared by his loving hands, as I’m still working.
We never expected to enjoy so much future….and we never take one day for granted. We are grateful that he wasn’t killed in a car accident cuz it’s given us all this time to appreciate the gift of each day.
We know fully that the future hasn’t been stolen from us……it was never guaranteed to begin with. Rather, we know that none of us are getting out alive….and that’s okay. We feel fortunate to have each other and a daily plan for living - being grateful for each new day- one day at a time.
We can’t change his cancer diagnosis: we can only choose to NOT let it be the focus of our lives.
I pray for your peace and comfort and that you enjoy….really enjoy …. the gift of each new day.
I can relate to your situation just as others 100%. I considered myself in perfect health and very fit cycling 200mi/week when got a shock of aggressive PC (Gleason 9) diagnosis in Feb. 2021 when I just turned 58yo!
At first it looked like prostatectomy (done on 5/6/21) took care of it all but 3mo post-op PSA was still high (4.2) meaning cancer has metastasized and so I had stage 4 by definition at that point.
I moved my care to Stanford and more diagnostic imaging (PSMA) discovered small single met in T2 Vertebrae which they did CyberKnife on 12/2/21. Sadly another PSMA in Feb. 2022 showed 5 small spots in my ribs and my oncologist put me on ADT since March 2022 that immediately brought PSA to <0.04. Good news these mets were small and successive PSMA in July 2022 showed them shrinking. So after 18mo of ADT I'm now on vacation from it due to good remission and looking forward of getting my testosterone back to prior levels.
the biggest side-effects from ADT I experienced:
- loss of self-confidence and increased sensitivity. I get upset easier now.
- sarcopenia. I regularly do body comp DEXA (every couple months) and saw decline of muscle mass and bone density since ADT initiation.
- osteoporosis (-2.7 T-score in remaining right femur neck). I fell on my left hip this July while riding slowly through parking lot and normally such fall would be nothing but this time pain was huge and turned out I fractured my left hip joint! They did complete hip replacement next day and I quickly bounced back to my normal activities. But this rang a huge bell!
I strive to allow least possible amount of drugs into my body (like Prolia suggested by my oncologist after recent osteoporosis DEXA result). Instead I try to find natural ways to improve my situation.
From all my research and Googling (including on this site) I realized best way to counter-act both sarcopenia and osteoporosis is heavy resistance training. I used to do this in a GYM near my house couple times a week. But now I discovered X3 Bar training program and follow this at home (I got cheap knock-off bar and bands at Amazon) religiosity 6 times a week alternating push/pull days. I feel much better and still am able to ride my bike 100+ miles a week. I will enroll into OsteoStrong program to help reverse osteoporosis (their franchise Los Gatos location is just 5mi away).
Huge source of motivation for me is discovery of the story of Guy Tenenbaum who was diagnosed with stage 4 PC and given 3mo to live in 2018 but is still very much alive and kicking. youtube.com/@SurviveFromCancer
I was already following low carb way of eating since 1999 (when I discovered Atkins diet and quickly dropped from 223- to 73 lbs in 6mo and kept it that way ever since) but now started full keto with Guy's protocol of supplements and hope this will prolong my remission if not cure it completely.
Must be a cheaper way to accomplish same thing ? For even lower joint risk for us older men,
maybe use isometrics? At T score of -1.9 pre-treatment, even wondering about using the 25 lb hand weight I recently bought? 5 "curls" ? seem to be plenty for this old weaklin !!!
Correct. X3 Bar system. I'm looking at good deals on Ebay to get used one.
Meanwhile, while we spend 3mo here in Spain I simply ordered this knock-off bar amazon.es/dp/B09P4NXPVW (they sell same at US amazon.com even cheaper) , set of 5 bands amazon.es/dp/B09P1J7TCT and a thick plastic cutting board for a foot plate. This does the trick just fine! I'll leave this setup here at Mallorca home and will get similar once we return home to San Jose. this one looks like direct copy of X3: amazon.com/dp/B0C33WTHLC
The actual hardware is less important but most important thing is following training program and performing exercises correctly working on a form. There are many videos on Internet where John himself explains it all. Like:
I must note exercise alone is not good enough as proper diet is needed. John Jaquish pitches carnivore and one meal a day with intermittent fasting for his X3 system to work (with plenty of protein and even his amino mix) while Guy Tenenbabum's success was based on keto with very restricted proteins (he admits he does very little exercise and lost most of his muscle because of it).
This presents incredible challenge:
- on one hand you want to starve cancer to death by depriving it of glucose/glutamine (see works of Dr. Thomas Seyfried) and excessive protein can be converted to glucose by body.
- on the other hand muscle mass and strength are big factors of longevity.
so I personally do now Keto since August with restricted feeding window (4h)one and fasting days but consume enough proteins to stimulate muscle growth using body composition scales (and DEXA) as a feedback.
Sadly, my oncologist did not order specific bone density DEAX before starting ADT so I don't have a baseline.
I was doing body composition DEXA scans regularly since 2011 (for athletic reasons at first to check my body fat %) and keep doing these now every couple month (through bodyspec.com ) but body-comp DEXA while using same technology does not zoom in on hip and spine areas so only shows average BMD, T/Z scores for big areas like torso, pelvis which in my case did show drop since ADT start was the T-score was still above 0 so I did not realize how bad it was in a specific areas such as femur neck.
My only motivation for the resistance training is supposed help in countering ADT SEs. Not convnced of any proof of starving PCa.....has been discussed in this forum many times in the past. I try to control carbs in order to reduce chance for onset of diabetes...nothing keto though.....managed to lose 20 lb over a year simply by counting calories. at 190, another 10-15 punds would probably be good.....then again there are studies showing better health outcomes for older folks who are 10-20 lb "overweight". at 6'1", left HS at 160....that would seem ridiculous at my age now!! maybe 175-180, my weight for much of adult life. I'm NOT an athletic build ....ie broad shoulders and narrower waist.
I too am almost 6yrs into a inevitable death sentence.....i got the news ...turned to me wife said....you can bale right now....but im not letting this dx ruin my future....and i started living like theres was no tommoro.......i was luck and got in titzn trial..prob. saved me.....and i also joined this group and it for shore made it alot mor realSome chase rainbow cures..but alot of us accept the hand were dealt ....and blufx death till the river card.....good luck my friend......heres something i wrote a few days after dx.....
Nothing can prepare you for the way I feel be you flesh and bones or Man of Steel
The strongest of faith
Start to reel
When the doc walks in
And says heres the deal
Your heart drops your
Vision dims,are you
Really hearing him
Life turns on a dime
Like being sentenced
To death but you
Commited no crime..
I stared out the window unable to speak....
Doc said something about aggresive cancer
Removing prostate..not the answer
They would turn me into a gelding..
Maybe 5 years is what i understood
After i had my little pity party
Got a second opinion...
Then the fun started
Been 18 mos
Side effects suck
Lupron and a double blind trial
I Dont sit around
And i always smile
Can still get it kinda up
Just takes awhile
For all of you guys in the same boat
Remember that even the guys in the white coats
Have a expiration date....we just found out that ours is just little more flexible...
"You do not have an expiration date...it's just a best-before, not mandatory", this is what a dear friend of mine told me when I gave him the great news of my diagnosis, and I admit we started laughing like crazy! 🤣🤣
Unfair? Fairness is an illusory concept that does not exist in real life. Fairness is a thought idea invented by humans, a product of wishful thinking.
We get what you’re saying. Our vision for the future didn’t happen. Side effects of treatment have been cruel, but life is still good. This is a couple’s disease. It takes a while to go from the mind set of “dying from cancer” “to living with cancer.”. We’re more than 10 years into the fight. Give yourself more time to adjust, mourn what you’ve lost and you’ll be more able to embrace what you’ve got left. Be kind to yourself and each other.
I completely get you. While I understand the fighter mentality... the grin and bear it opinions... here on HealthUnlocked, it's also okay to grieve for what might have been....what should have been.
I'm 7 years past that Stage IV, Gleason 9 diagnosis presented to me on my 49th birthday. The first 5 years I worked, grinding through my job and trying to be something like a present and active father for my teenage daughter and son until they moved on to their own lives. It was a blur of effort. Thoughts of loss were usually kept to the edges of my mind.
Not so now. I medically retired 2 years ago and there has been little respite from continuous changes in my scans that require monitoring and treatment decisions. My cancer is always in my face whether I like it or not.
Our children are off to their own lives. My wife still works, of course. I am left to occupy my time. While this time is (largely) spent productively or creatively in some manner, the specter of my life's original intentions is always there, aching like the phantom limb of an amputee.
("....Us growing old together was a given...") Yeah. I hear you, and it hurts. A lot.
I give myself time to grieve. This morning, it's with you. There is a poem by J.R.R. Tolkien that I often think about:
I sit beside the fire and think
of all that I have seen
of meadow-flowers and butterflies
in summers that have been;
Of yellow leaves and gossamer
in autumns that there were,
with morning mist and silver sun
and wind upon my hair.
I sit beside the fire and think
of how the world will be
when winter comes without a spring
that I shall ever see.
For still there are so many things
that I have never seen:
in every wood in every spring
there is a different green.
I sit beside the fire and think
of people long ago
and people who will see a world
that I shall never know.
But all the while I sit and think
of times there were before,
I listen for returning feet
and voices at the door.
Tolkien reminds me - as do all of the curmudgeons and fighters here on HU - that escape from the demands of the ghosts of the past and the specters of the future is found in the simple act of living now with the ones we love. Right now.
So, Mike, per your suggestion, I am now planning to make dinner over a glass of wine. It's a nice, bright autumn day here, so I think a chicken souvlaki would do nicely. I will toast the love of my life while the sun sets tonight.
Thanks for the post, Mike. It's nice to grieve with someone who understands. - Joe M.
I was 52 when diagnosed. I was sure and everything I read had me done for in 5 years or so. I'm 65 now. I'm not what I should be but still here. You can do everything with your wife you do now. It's not roses but you can go on. The med I'm on now was not around when I was diagnosed. And I'm told it's what is/was saving me. It's losing efficacy but I got 3 years or so out of it. And there is more around for me to do battle with.
The future is not yours to see. It never is for any of us. The past exists as fragments of memories; the future is a potential of hoped for things to come. Come to terms with your future within the harmony of now. You will find peace there.
Hey Mike keep your fighting spirit. We all have stories good and bad . Enjoy every day to the fullest there are many things that could end your life besides this beast. I've been in this for 16 years now and get up every morning and make the most of each day. Stay strong!!!!
Stage 4 at age 50 IS a raw deal….it’s hard to absorb……On the plus side more attention is being paid to prostate ca these days and improvement in treatments are legion….We don’t really know what strides will be taken over the next 5 or 10 years…… ignore those who advise that one “simply” do this or that….you were robbed of the type of future you hoped for….but the universe is not going ever to apologize to you. With good medical fortune your treatments will be reasonably comfortable and your physical life will be less compromised than you imagined…..some men manage to keep active sexually during ADT….and there is no reason for you not to travel,dine with wine,and work in the garden with your wife……your biggest enemy is going to be an inability to focus more on what you can do than what was robbed from you……no unicorns or rainbows in this scenario just paying attention to the fact that you likely still CAN do more than you can’t…….sorry for your loss.
Mike- Let me be honest. Yes- your future has been stolen and your QOL while still living will not be the same. Having said that, many of us, including myself (who was Dx with met PC at age 54) have and are surviving for lengthy periods of time with qualities of life that are still quite enjoyable. I have been on Lupron and Zytiga, continuously for the most part, for 11+ years and have had the good fortune to see remain active with golf, tennis and recently tins of Pickleball) and more importantly have seen my 3 sons grow up from youngsters to young men, with 2 in college and the 3rd on his way. I hope you respond well to treatment, remain positive, eat healthy and well and are able to deal with all of this, including the side effects and have an enjoyable life with your wife and others, cooking amazing dinners and enjoying the wine you drink!
Enjoy each day, which of course you hear from everyone, but I’m 4 years in, with the same diagnosis, working full time and riding my motorcycles every day for work. This diagnosis can distill everything, each glass of nice wine is tastier, each voyage is filled with more intense memories and every kiss is sweeter. Embrace each 24hours, and know that there are people here to offer support and encouragement. Take care my friend, and I’m loving one of your countrymen, Alex Isaak play his heart out for Newcastle and each win is so intense. Take care
Got it but I think you replied to the wrong person, I workout since I was 18, now I am even increasing to 6 times a week 😜😜 and as far as research goes, well, read my posts, I was and I am a researcher by profession and now by passion (and need). But hey, you are a tiger and your energy is palpable! Thank you brother!
Grass is always greener on the other side of the fence. Mike you and the majority of warriors on this chat are very fortunate! I say this because you have a loving wife by your side, children and family near by. In my case the struggle is not just the realization of my future stolen, I battle this disease alone, my immediate family are far away overseas, I've given up on finding a life companion, I am alone. I don't have a problem with being alone, but ever since DX I know I can't do this alone. Up to this day, I am okay, but very distressed knowing what comes up next. I have been rejected for being who I am, my entire life. If and when things start getting worse, I just won't have anyone by my side. The realization of it is pretty scaring! Mike enjoy your loved ones and do everything you want to do. QoL to the max.
I know I’m very fortunate in many ways; I have a wonderful wife who is 100% ride or die with me in this, friends and family, and I don’t have to worry about the financial aspect of my treatments as they are free of charge.
Blueribbon63, I’m sorry you are battling this alone - that must be so very hard. Please keep in mind you have friends rooting for you here. ❤️
So sorry to hear that. I hope we are getting closer to make this a chronic disease, like HIV is nowadays, and no longer a life shortening beast. And judging by the speed of new developments I would say we are on the right path, also with nutritional and fitness becoming standards of care as well. I hope I will have great news soon, meanwhile you can always talk to us on here!
You see what a wonderful thread you have inspired with your post Mike. Wonderful to read all of these. Loved that one who said “your second life begins the day you realize that you only have one.”
I am 16 years since diagnosis and that day for me. Retired from my practice that year to focus on living this one to fullness (Job 1 every day). I note you have prioritized QoL over Lupron/abi etc. as have I. I now do long cycle BAT, 3 months of very high Testosterone shots then alternate with just one month or Orgovyx/Nubeqa which is easy to cruise through. I remain hormone sensitive going on three years on this with undetectable PSA. I just mention this as a possible option for you if your PSA rises. Can provide much info on this if of interest in the future.
Two other perspectives have helped me:
“Death” is not actually a “thing” from the largest perspective. Because all life is one. And life goes on in ever new forms. And “A life well-lived is long enough.” Best regards Paul. ( I hope you have sold that business.)
Most know, Life is not fair. I've been on Eligard for five years. Experienced hot flashes and nausea (6 times+ a day) for 5 years. PSA undetectable. Now about to take a holiday.
You're lucky if you can travel. Take a day at a time.
Don't dwell on injustices, it only leads to ruin. Concentrate on the present and what you can get out of it. It could be a LOT worse.
Personally, I would prefer to have this than any of my kids. I would find that intollerable. With all the stuff going on in the world, be grateful you're not dealing with any of that.
Yes concentrate on the present, don't worry about trying to really better the world, you can see all the war and grief going on, let the so called warriors for peace and fertility do their stuff🙄
I know everyone here likely feels as you do but the age you are diagnosed definitely matters. You were diagnosed at a very young age for this disease, though the age of prostate cancer diagnoases is getting younger, in particular for agressive forms of the disease.
I was diagnosed at 57 ( I am now 64) and like you, it was agressive and it metastasized quickly. There is no way to stay positive all the time. I think it's important to recognize the mourning we go through for what might have been. I see a therapist (via telemed) who deals in terminal illnesses and it does help. I have gone from being a succesful profession, to being on SS Disability Benefits for income. My fatigue is too great for me to work a full time job , especially with the brain fog from meds. I also have other complications that make it physically difficult to get around.
I do miss the work. I realy enjoyed it. It has taken a while since stopping work to start refocusing my life in a new direction. I am now writing a novel (for my own entertainment), getting back to drawing and painting, becoming more involved in the community with young people through mentorship and other educational programs.
The difference between getting hit by a bus and having a terminal illness is that with a terminal illness you have a rough idea of when it's coming. Tragic accidents happen unexpectedly.
I am sorry for your situation. If you can, plan those trips and fly to places on your bucket list while you are feeling okay. It can be many years before it imapcts your physical mobility. We hear you and understand what you are going through.
I think everyone in our situation wonders “why me?” and I would be lying if I said it didn’t feel extra hard everytime I was at the prostate cancer center being the only person not in my 70’s or 80’s.
I’m sorry to hear you cannot keep doing the work you enjoyed so much, but it seems you’ve found other outlets in your new direction. Myself I’ve restarted my woodworking hobby which is great fun.
Thank you. I plan to travel and do other fun things as soon as possible.
I think the problem is not that your future is stolen, it is still there, requires some work and risks in treatment options along the way, to navigate. It is, once you start really ageing into retirement age, the uncertainty of life expectancy, that it creates - that is the problem. I find it impossible to give a life expectancy and just what I need to retire, wife and daughter both passed. Metastatic post dx heading for 12 years now, just about to turn 65. Not retired, still doing the business, the volatile nature of equities markets in recent years has not assisted. But you know the 'falling under the bus' argument does exist and any bar room conversation with friend or family will take you there. Not very helpful, but it still sits. On ADT plus minimalist bicalutamide, PSA at < .01 again, 3rd 'remission'. So live on brother!
Lots and lots of posts here............... I probably am one of the few guys who should not be posting about "Not fair". If you read my bio I found out about my Pca in 2002 when I was 66 years old. So here I am 22 years later and just turned 87 years old. Sure I went through the "why me" stage and sometimes I still think about why.
Now here's the part where I'm going to get a lot of flack, but I don't give a shit.....My oldest brother Steve arrived here in the US through Ellis Island in 1930 at the age of 10 (couldn't speak a word of English). A little over 10 years later (1940) he's on the way over to England to get ready for the Normandy Invasion in WWII. After Normandy he fought in Belgium and Germany and when it was VE day he was furloughed home to get ready to ship over to fight in the Far East. Two big ones dropped on Japan (Thank God) and then it was VJ day and he came home. He got married and had two children and died in 1981 at the age of 61 of stomach ca. He always spoke about the young military personnel who were slaughtered on the beaches of Normandy. Too young too soon he would say.
Fair? What's not fair living to 50 years old or 87 years old fighting those tiny mother fuckers that are eating us alive? Live you life and stop thinking about fair....and on Memorial day or Veterans day just thank those guys who gave up their lives so you and I can live to see sunrises and sunsets...Please don't piss and moan but laugh your ass off. Whatever time we all have left was written long ago, make the most of it..... love your wife, your children your family and your friends....If you don't like this post or my silly joking ones just ignore me the way my wife does.......Fin....
Thank you John. I do appreciate a lot of things in life and I’m usually a very the-glass-is-half-full kind of a person, but even so this situation can break the most optimistic person.
But I hear you. There are many people having it much harder, and we should make the most out of the cards we have been dealt.
FortyWinks, thank you. Yes, I’m lucky to have love and friends around me, but even so this can sometimes be a very lonely place.
I think one of the hard things to wrap my head around is that I feel young and healthy (now that most SE’s from treatments have stopped), but I know I am sick and most likely will not live for as long as I’d like, and the last part of my life will probably be painful and not very fun.
But as most people here are saying; we must make the most out of what we have and live our lives to the fullest, and perhaps knowing more about our end station than we’d like, can actually be a blessing helping us appreciate each day even more.
Contrary to what the people know, however, Joe Tippens was a participant in the Kitruda clinical trial at the MD Anderson Cancer Center, and his improvement was likely to be the effect of immuno-cancer drugs.
Bob, I think what a lot of the comments above are about, is that even though it might feel like everything is lost, it isn’t, and we must make the most out of what we have.
Hey guys- i am 5 1/2 years into APC with lots of Mets and live in Orlando Florida. I have a great life, few side effects and a very positive outlook. I am 72 but my 3 best friends are 50,53 and 54. The 4 of us are going skiing in Breckinridge in January. Two weeks ago my buddy and I rode theTwisted Sisters motorcycle route and then had fun with the wives on the River Walk in San Antonio.
In august we spent two weeks with friends and family on Guana Cay in the Bahamas. In June our two grown sons (34 n 35) and their girlfriends spent two weeks with us in Italy, Greece and Turkey. A wonderful time that was capped off with one of my sons getting engaged on the island of Mykonos’s! In late April, 2 of my buddies and I rented motorcycles in Colorado and then rode into Utah and Arizona. We camped out each night in desolate areas and ate a can of beef stew heated on our campfire. The skies were chock full of stars!
Last year I captained boats in the BVI and Alaska. The Alaska trip was 7 days of sleeping, fishing and cooking on a beat up 38’trawler. Once we left Ketchican we never saw a cabin or other buildings for the whole 7 days. We have ridden motorcycles in Montana, Canada and Idaho. My 50 year old friend and I are planning a motorcycle trip to Norway then Iceland during the first week of August next year.
I am not trying to brag or gloat. I know that I have lucked out in not having side effects from ADT. I really don’t think about my cancer much. I think about my next adventure, about my sons lives, about how lucky I am to have a WONDERFUL wife and youthful friends. So that is my 2 cents - get going and don’t stop. Worrying is a waste of time. Rock and Roll hoochie Coo!
You set a great example Fitzbruce1. I hope to start traveling and other things as soon as possible. My wife has not been doing well the last months so my days have been spent tending to her trying to make her feel better. She is slowly improving, and as soon as she is well enough and feel up to it, we will pack our bags and go.
I can relate to this. I was diagnosed at 47, after successfully getting through treatment for a rare aggressive Lymphoma cancer at age 37. After just finally getting back on my feet after a divorce, I was hit with the regional prostate cancer with mets in my lymph nodes. This summer I finished two years of ADT+EBRT+HDR treatment, and my PSA started rising again three months after treatment ended.
Fortunately, I don’t have a wife or children to worry about leaving behind, but I do share the feeling of having a vision for a long life snatched away. The flip side is it is way more challenging journey as a single man than when I was married (my ex was instrumental in helping me through my first cancer journey), and not having family around to help.
I had been trying to ignore the terminal potential of APCa - we all have an expiration date at some point- but this just brings it home. I appreciate your post Marshall, you’re not alone in your feelings.
I hear you loud and clear. I am stage four because two doctors overlooked my elevated PSA for four years. I didn’t have to be here. Stay positive, exercise and good luck. I want my future back too!
We are going through the same thing, he was just diagnosed in October at 53. Thank you so much for sharing your feelings, as it gives me insight into his feelings, which we currently don't talk about. Maybe after the newness of this eases off a little he will talk to me more.
To generalize, us men often have trouble opening up and being vulnerable, and when treated with ADT we are really vulnerable since the treatment removes so much of what makes us feel ”like a man”. All of a sudden our sex drive change (or disappear completely), we can’t get hard, body hair disappear, muscles disappear, fat shows up in new places, you feel weak and fatigued, emotions run wild and you start crying all of a sudden - and on top of this you have to deal with a terminal illness. It’s a very hard situation to suddenly find yourself in.
I really hope you start talking to each other soon, because you both need it to be able to handle this new reality and to make the best of it and your future together.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Thank you for sharing.
Future after Erleada/Lupron
Future stuff to look into
Future of advanced prostate cancer treatments. What to expect?
Are man-boobs inevitable? A \"bro\" in my future?
Castration resistant in just a year? Normal or not? Provenge in my future.
