I had someone recently tell me "I'm so glad you got through this!" I really didn't know what to say. I am not "getting through this" and sometimes that's frustrating. Everyone automatically thinks if you "look good", everything is OK.
One the one hand, I don't want people feeling sorry for me or being pessimistic. But I also find it frustrating when people just blow it off like it's nothing. "Oh you're going to be just fine." Waves hand dismissively.
It's a difficult thing to deal with at times. I'd like to know others thoughts on this.
Outside of my wife and adult children I only told my 2 older brothers. We plan to keep things quiet as long as possible. So far everyone treats me the same since they don’t know. I don’t want to be fussed over or treated differently. I don’t want to hear I look great even though I’m broken inside from chemo. I know sport a baseball cap outside. I don’t want to hear about other cancer stories from people i barely know. I’m a private person and hope to keep it that way.
We have kept it quiet as well. My husband didn't want to be thought of differently by his friends whenever they saw him. He wanted to be out on the golf course with them having fun without everyone feeling sorry for him for having a terminal disease. He was diagnosed one year ago with stage 4 cancer. He looks and feels great. Eventually, they will know, but until then, he does not have to be greeted by everyone he sees with questions about how he feels and what current treatments he is going through. He wants to escape this monster and have fun whenever he can. Maybe we are wrong, but everyone has to do what works for them.
Keeping it private backfired once. A couple who does not know took us out to dinner which was very nice. It all changed when the husband told us how a friend recently died of prostate cancer and he went into great detail as to how terrible it was. I was mortified and when we got home I was very disturbed.
Most people speak out of ignorance!! They thrive on the mundane and gore to enhance the drama in their “story of the day”!!
We know the facts!!!! That some men do die from the effects of PC as they do by getting hit by a bus!! We know better that sooooo many more men LIVE!!!
I always think of Robin William's line in Club Paradise when he responds to the statement "You seem fit enough." by replying, "Oh, inside, I'm a mess."
Its been an interesting experience. I haven't been shy about talking about it. I don't care who knows but you really get a variety of reactions and find out who you can count on. It can be a bit depressing when you realize someone is not coming around any more but you now know who is important in your life.
I agree. You sure figure out who your friends are. I think for a lot people we respresent something that they don't want to face. I think that's a big part of why we can sometimes be shunned.
Great post. To me, what is a little glaring is how hard we fight ever day with, most people in my life (90%) kind of forget. Good friends actually disappear. Some tell me that I have "good color." To me, just acknowledge it, and stick with me! I would appreciate it so much when a friend or business associate just takes a second to ask me how I am doing?
I've had a lot of friends say "Let me know if there is anything I can do to help." I always say something like "Just getting together would really help." And many have made more of an effeort to do that which is great. My daughter and son now visit more often and so do our friends. Too bad cancer had to happen first, but I'll take it!
My adult children also visit more. My son and I even go to movies whenever we can. Both children now have a habit of hugging me when they leave. Which causes me to break down a bit once they are out the door. Having this disease with children regardless of their age makes it real tough.
I know what you mean. When I told my son and daughter was the only time I cried telling anyone. That was the hardest part about this for me. I'm glad they are least adults, but it was still very difficult.
I generally try to respond in a way that seems authentic to me at the moment. If I'm "looking good" on the outside, but feeling fatigue, I'll come right out and say that I'm feeling pretty fatigued today due to the medication I have to take. If I'm feeling pretty good today, I'll say I'm feeling pretty good today. I've come to very casually talk to virtually anybody about things like hot flashes, and other side effects.
If somebody thinks my "incurable" prognosis using current best care has somehow magically changed, I gently remind them that even my current treatment(s) that may be working well now will stop working eventually, etc. Sometimes I share my sadness that a few other men I have known in similar situations were diagnosed after I was, and they burned through multiple treatments, more rapidly, and have already died. Sometimes I express my Gratitude and sense of just plain good luck that I've been able to survive this long (6 years, so far, after a starting PSA of 5,006) with as good a quality of life as I've had, even if it hasn't always been perfect. If I'm feeling anxiety about the future, I acknowledge and share a bit of that, but I try not to go overboard with it since I know from experience that it usually passes with a little time and some mindfulness.
Overall, in my experience, it seems to work best for me when I feel some Compassion for both myself and for the other person. It can be frightening and painful for others to interact with someone else who has a serious or incurable disease. They need some understanding and "slack", but not too much. I also need to be authentic and care for myself, too. (I've seen this dynamic play itself out in hospital rooms, too, with patients spending way too much energy trying to make their visitors (who are giving off all kinds of signals) feel better and at ease, and wind up wearing themselves out in the process.)
Thanks for sharing your thoughts Charles. Your willingness to be so open is encouraging to me and others too.
That is one advantage of letting people know "the situation". It allows you to be more honest about what's going inside you and most people may not know what to say, but at least they have an idea about what's going on. In general they are understanding. Sharing my cancer diagnosis has allowed multiple opportunities to have conversations about what it's like to be diagnosed, end-of-life issues in general, facing mortality, attitude about life and many other things.
A lot of people are struggling with trying to find the best way to approach you once they know. For the most part, they are well-meaning and often try to tell you what they think you want to hear. That can sometimes lead to dismissive comments like: "Oh don't worry, you're going to live a long time" and "They are coming up with new stuff every day" etc.
I will always be open and share who I am with those around me. It's just who I am. I'm not going to let cancer change that.
I find it one of the most frustrating parts of this disease... the “terminal” status doesn’t change but even your closest friends and relatives act like you’ve beaten the cancer simply because externally you look “ok”. It totally does my head in.
I think it's hard for people to wrap their heads around this concept of a terminal disease that is often quite slow and not debilitating until the end. You look great exactly until you don't. And I'm sure that many of these people will be shocked when that happens, as if they had never understood. When people trivialize my disease it can also make me feel trivialized. But we are trained to not seek attention or sympathy so we are walking a line between wanting to be understood, but not pitied. There is a lot to say on this subject and each one of the comments here is making me think about more aspects of this issue.
There's at least one thread here devoted to the "disclose or don't disclose" to friends and relatives options. Ultimately and obviously, this is your personal choice.
One example of when things can get awkward is when recipients of your cancer information don't hear or don't understand the difference between Stage I and Stage IV. Often this is because they are eager to tell you an anecdote about their acquaintance who had some sort of early-stage prostate cancer treatment and is now supposedly cured. If you politely say something along the lines of, "That's great, but that's not an option for me", that's when the discussion is likely to get awkward.
It's a hard thing for people to understand stage 4, especially with a slow progression. (I am really grateful for that). It's like this invisble thing going on inside you while everything appears to be normal. For those of us who have it, it's remarkably clear. We get it.
I can imagine that some people who know I was diagnosed 3 years ago would think I must be cured. Who lives 3 years with terminal cancer? And again I am grateful for that, but sometimes I'm trying to keep everyone else from losing hope.
There's the people who keep it private, those who tell their family and friends, and then there's me. I posted my bone scan on Facebook That got people's attention in a visceral way that words don't. It's one thing to hear "metastasized to bone" It's another thing to see it.
I told everyone and have no regrets as everyone has been great with no stupid comments or excessive sympathy. As a sportsman I'm well know internationally and had support from friends all over the world.
I talk openly in the hope that people I know become more aware of PC and maybe they get regular checks when needed and are caught in time. I kinda feel it's my responsibility to spread awareness.
Nobody has avoided me or felt awkward talking about my PC to me, maybe partly about my attitude and theirs also
People do not want to acknowledge anything which reminds them of their own vulnerability and mortality....so they act as if in denial. ...minimizing the extent of disease
That of course ,is hurtful specially if those people are relatives or friends.
You are right ...people's sympathy has not much value...it cant change anything about our disease. .our own effort at proper care and treatment can only make a difference.
It's the same reason (mentioned above) that some people start avoiding us or reduce interaction with us because they don't want to be made aware of ultimate truth of life..i.e. their own death. In spite of so much new treatments, the word cancer still evokes lot of
fear and anxiety in most people. Lets ignore those people and stay on our course !
My sister in law, the nurse, announced this to my entire family. This was while my husband was in the hospital with a 7 level hemaglobin and potassium riders going in through three IV lines.
It's touchy because my husband doesn't know. My sister asked family members to take 4 hour shifts at times when my husband was sickest. SIL refused and said it was all just drama.
I haven't talked to her since, but that's not unusual. Seeing her for the first time at Thanksgiving. I have learned to expect nothing from her, but I never expected much.
I have told a lot of people except my two ageing parents who I don’t want to burden with my problems. That means I have not told a lot of relatives who might inadvertently break the news. I think people really struggle with how to deal with you and if you look great they want to make encouraging noises and it looks to them that you have cracked it. I have also had people that do not know but who have not seen me in a while say you look great and I am thinking if only you knew (in some occasions it was not appropriate to inform them then because other people were around and it would be a bit of a conversation stopper to say I may look great but I have PC and it is a long haul (hopefully) struggle). A difficult area so I have sympathy with those who can’t work out how to deal with me particularly since most of the time I want to be treated “normally” but occasionally I would like some people to ask how are you. A lot of people get that difficult balance right.
I never told my mother who has since passed. She surely remarked that I looked different and wondered where my hair went, and why what was left was white. Told her I was getting old. And I am getting old. Trying my damned best to get older.
Good for you Monte. I wish you all best wishes for your fight. It is a very personal thing. I am sure you felt you did the right thing by shielding her .Like you I did not want to worry my mother who was suffering from depression/dementia nor my Father who was worrying about my mother and it’s not as if they could have done anything about it.
Spooky! I was just thinking this yesterday, complete with the saying on the headstone. My take is that many people live in denial of their mortality, which allows them to get on with life, raise their kids, plan their retirement, all without thinking that death or illness can occur at any moment. It's how I used to live.
I've decided not to poke too many holes in their balloon. After all, some men have been known to live for decades and I have no concrete reason at the moment why I can't be one of them.
Not everybody is like this. One of my running buddies lost her son to a drug overdose around the time I was diagnosed. We can be completely honest with each other. It's enhanced by the tenancy of runners to be completely comfortable talking about bodily functions, chafing in rather personal areas, etc.
I can also talk to my wife about almost anything. It's brought us even closer in the past year.
Same with me...My wife and me have never been this close emotionally. I developed more love and respect for her the way she handled this tragic situation and is like a rock solid life partner at every step
She has become my friend, confidante, guide and Guru now. She says what,s the point of telling other people ..anyway they can,t do anything...we have to carry our own cross.
That is really the simplest solution and it's one I use with people that I'm not really close to.
I 've been tempted to just say that my cancer is "gone" and most people don't know enough to question it.. Based on what I know now, it looks like 2 people I have known did exactly that with me. Each of them said they were completely cancer free. That was the last thing I heard from either of them. Makes me wonder if they regretted telling people and that was a way out.
I've kept it quiet for the past couple of years, however I let the cat out of the bag this weekend with my friends while promoting my Movember fundraiser participation. We will see how they react.
I know that everyone is different... different friends... different family... different co-workers, etc.
I've had stage 4 for just over 2 years now. Besides my wife and son, I've only told 4 very close relatives. I already wish I didn't tell at least one of them but there is no going back.
In my case, no one else will know what to say... they will act differently around me and sadly only some will worry. Too soon for me to go down the path of making it public.
Clearly everyone approaches this their own way. Since no one described my approach, this is what I did: I work full time with a large group of people. At a group meeting I just announced that I have prostate cancer that has metastasized into my lymph nodes. I said I will be needing a lot of treatments and will be missing work sometimes, but I expect to die with it, not from it. In other words, I explain it to everyone but with a positive spin. A few have since asked how is it going, and I answer (truthfully) that the treatments (lupron plus zytiga +p) are working great and so far it is completely stopped. So: I use an open approach but with a positive spin, since that is how I want to feel about all this.
No one really knows what we are going through except us. Family, friends, and even our own Doctor. But I guess that's how it is with most illness's. We might look good, but we know better. It really is a private nerve wrecking personal battle. But I always say "Thank You" if people tell me I look good.
You are luckier than I am I guess ... giant boobs, hairless armpits down, shriveled / missing man parts .... sweat pouring off my clammy cold forehead, pale facial color ... or red faced huffing puffing out of breath ... shuffling my legs to walk ...
This just to get up to my GP’s office at Kaiser .... hummmmm .... cancer may have made me look better too ... cause often one of the staff follows me around in the distance .... no doubt admiring my new cancer enhanced handsome good looks ....
Yea I can see what you are saying ... rite on brother , we got this yayahahahaya.
Did ja ever see that “ Saturday Night Live “ skit where someone is interviewing a clean cut attractive couple and that roughly dressed 2nd lady that is sauntering in her chair .... the interview after all of them were abducted by a UFO and just got back ??
The couple relives their amazing existential experience of bright light ... first contact ... beautiful aliens etc.
The ragged sauntering lady that had the opposite experience ....lots of invasive probes , aliens groping her female parts etc .... ??
Really funny yayahahahaya.... this seems a bit like that skit .... I’m the probed and groped experience... you are the nice looking couple and PCa is the alien yayahahahaya yayahahahaya
Yayahahaha yayahahaha yayahahaha.... I know you are saying something profound here ..... back a year ago I was losing 18 lbs a week, adt started and I jumped 90 pounds.
Now that I’m stabilized everyone wants me to lose some bulk. I was thinking “ EXACTLY THE SAME THING !!! “ yayahahaha
You are right , if I slim down , those puppies are going to stick out something awful yayahahaha Yikes
I have a friend who has cancer and who has lost 70 pounds (esophageal/stomach). I heard he was tired of being told he really looked good. At a gathering I walked up to the 6'2" man and said "Geeze, you look like a scarecrow." Talk about stunned silence. He got a kick out of it and is still my best buddy. Stage 3 and gaining his weight back. He has a good chance of beating it.
like Tom67 above....I have put it all on Facebook. It started because I wanted to be open about my Gleason 6 diagnosis and the treatment. I didn't want people to ask my partner (as I figured the radiation would make me look a little less pretty...LOL)..."is John okay?" "is John Sick". I know he's not good at being communicative with people.
That said...my. Gleason 6 turned into full blown Stage 4 castrate resistant Super Dooper aggressive Cancer(and pretty quickly, I might add). It was hard to turn back. Kept being open to all and hoping for a long remission...but it's been up up and away with my PSA....so everyone knows I'm stage 4.
That said...I feel like a LOT of people do not want to hang out with me. It gives me strength as I want to outlast the bastards and dance on their graves. I think they don't want to invest in someone who might be "sick" soon. I have a few friends who are great. A FEW. Try making new friends with this elephant in the room. That appears to NOT be a possibility.
All in all, I feel it's been the right thing to do as I have had people who are very private "come out to me" with their own cancer and other health issues....and I have been able to help them (even with entirely different cancers) get to the right doctor/treatment, etc.
*someone I met(sat next to) on a transatlantic flight a couple of years ago...has been one of the most caring people I know (he lives in Switzerland). He writes often and has sent me a couple of lovely gifts (one a book he wanted me to read). He seems genuinely interested in my journey and my health.
ya never know.....
gJohn
p.s. throw your seeds by the wayside and some will sprout.
p.p.s. I'm still "pretty"...LOL...after radiation, HIFU, Provenge, Chemo, Lupron, Xtandi, catheters, etc.
I also had great conversation about my cancer with someone sitting next to me on a flight. I explained that terminal disease had given me a new awareness now.
At one point with a very serious look on his face he said, "What's it like?" I wasn't sure which part so I asked him. He said "To know, what's it like to know?" I still think about that sometimes.
That’s the difference between you and I. I would likely have said “ terminal disease has given me......... and that’s why I don’t mind being on this flight knowing what I know”!!!! Then fake asleep!!!
Jc
in reply to
What a jackass question ..
in reply to
I just found it to be eye opening that someone would be so interested to know what it's like to "know" as if it's some profound truth that I had discovered, This guy was so serious and in awe. It made me realize how so many people really don't know. I remember talking to a guy who is around 75 years old and I told him I might only have 5 years left. He just sat there shaking his head. He said he couldn't imagine what it would be like to find that out. Left me shaking my head.
I have always believed that strangers bring us "messages" of great meaning. Or as Blanche Dubois said in "A Streetcar Named Desire"...."I don't know you, but I have always relied on the kindness of strangers".
It seems to me like strangers know more of the right things to say than do lifelong friends/relatives.
p.s. "to know what it's like to know"....conjures up the expression. "I know that I know that I know"~~which I believe I am remembering my my "yogi/yoga" interests of the past. Perhaps it was "Autobiography of a Yogi".
I disagree with most comments here. I think we all have a roll to play to raise the profile sky high of prostate cancer and the ravages it does in all our lives and for us guys we just 'chin up' and put on a brave face just like we were told as boys when we fell over....be a soldier. Breast cancer has a much higher profile and hence government support because people/women like Olivia Newton John sing about it from the rooftops of the world and walk the Chinese wall just to emphasise it in the media. Government and philanthropic support follows suit and hence is much better for women. I am disgusted celebrities like Elton John and Rod Stewart say come out after the event and just say oh yes I've had prostate cancer and been treated and I'm all good now. The media laps it up and spreads it like prostate cancer is highly survivable just like a bad cold. Literally makes me spew.
People like that - including ones who tell a mother who's just lost a child "you can have another one" and doctors who say "you've got five years" - are not only clueless but also thoughtless, which multiplies their cluelessness exponentially.
I've had prostate cancer for 11 years, coronary artery disease for 11 years, three bouts of melanoma and the scars to prove it, and there was something else serious that slips my mind, plus disabling arthritis (which made me have to give up surfing, and that alone has become a permanent, devastating pain), and so on - and because we've told our friends, I've become known as the sick husband, which I really hate. They always ask my wife how I'm doing, but at least they never mention any of it to me, they don't ask unless I bring it up, they don't look at me with simpering pity - they just carry on like I'm anyone else, which I deeply appreciate. Many people we know of all ages have been through or are going through the same kinds of traumatic illnesses or injuries, so they're knowingly matter-of-fact about it all, and maybe that's why they don't say stupid things like the ones you quoted. I guess I'm lucky that way.
I think all you can do for the clueless ones is to be gracious and silently forgive them for they know not what they do. For them you have to switch to your "in one ear and out the other" persona - hear what they say (because how can you not?) but then instead of holding onto it, let it pass through your mind and out to wherever inanities go in this universe. And in keeping with their ineptitude, they'll never know how kind you're being toward them. To respond with the rudeness they might deserve, or with silent seething resentment, would only make you feel worse.
Maybe some of these people you might regard as worth the effort of setting straight - the ones you think might understand how callous they're being and correct their behavior. It's strange that at the same time that you're so sensitive, physically and emotionally, you also have to grow a thick skin to protect yourself not only from others who try to define you by your illness, but also from your own self-sabotage.
It's all outrageously unfair. The wrong people get sick.
Like many others, I didn't tell a lot of people. Just my wife, 3 boys, sister an d a couple of friends I really don't want people asking how are you feeling when they see me. From the outside, I look great, From the inside, my emotions are up an d down. I'd rather for the people who don't know to just treat me the way they've been treating me.
I am dealing with APC and Multiple Myeloma. Family doesn't make stupid comments but some friends do. The most common one is "boy you look great" while my wife is saying to herself "and I look like shit". Disease is harder on the caregiver than the patient.
My friends are the same way, wow you look better than the last time I saw you. You must be in remission 😖 most of them I just tell the thanks but my real close friends I have to remind them I am a terminal cancer patient and sooner than later the monster will come back and beat me. Hate this monster 😡😡
Yeah. It IS awkward. Good wishes no matter how clumsily delivered are well intended. My favorite has been "you look GOOD" (as in not dead yet). Smile. Say thank you. They ARE good wishes sent to you.
Most people will want to be in denial because they don't want their boat rocked so they just want that out of their minds pronto. " It can't happen here and so I am going to give you a pat answer or comment"
It can be frustrating but people don’t know what to say because they fear their own mortality too. They also don’t understand that how you look does not reflect how you feel. People aren’t the way we want them to be, they are just the way they are. Try not to put too much into why they don’t understand and how they respond. It is what it is.
Lots of interesting replies. To me it all depends not only who is asking, but the situation. For most people, in most situations, it is pretty much a rhetorical question. They really don’t give a rat’s azz, and really don’t want to hear me whining with a “woe is me” reply. Like 2Dee, my stock response to them to the “how are you?” question is to reply, “never better.” It’s a far more positive way to reply to an insincere inquiry than saying “none of your f#%@ing business” and pretty much ends that conversation 😎. I even use it with my Mayo M.O. and my family doc just to mess with them, and they both know I have a Stage 4 PCa.
For those who do know of my PCa and might actually care, back when they first asked me, I told them it is incurable, but treatable, and I’m doing well right now.
Sometimes I remind them that it’s not just a worn out cliche, but every day really is a gift. Or, as Warren Zevon put it, “Enjoy every sandwich.” I think he meant that not just literally, but as a metaphor for the realization that our clocks might be ticking a little faster than healthy old people, and we should savor every moment, enjoy life, appreciate and be thankful for everything (and everyone) we used to take for granted, like many of us do prior to that day we were sitting in an exam room having the guy in the white lab coat tell you that you have Stage 4 prostate cancer.
For the most part, my family and close friends have been very good, very tactful, and very supportive without going overboard on the semi-sincere sympathy. After 4 1/2 years, it no longer comes up in most our conversations. When it does, I tell them honestly that I feel fatigued, particularly when my wife makes me do yard work, but add that I played 18 holes of golf twice last week, just to keep it in perspective. I thought that was a better response than telling them (While looking upwards and pointing a finger up toward Heaven) that I have started a “go fund me” page, and asking them if they would be willing to contribute their kids’ entire college funds to it.
If someone asks you if they can do anything for you, tell them, “sure,” you can mow my lawn and make my mortgage payment. That almost always guarantees they won’t ask you that again. Seriously, I just ask them to keep me in their prayers.
BTW, If someone tells you that you look great, you might reply by telling them they don’t look so good and ask them if they haven’t been feeling well lately...maybe suggest they make an appointment with their family physician.
Everything I say is a lie...and that’s the truth. 😉
For me, there are a few repeating themes that are uncomfortable for me, but surely not malicious.
First, I need to talk about it and share it with my family and friends. Interestingly, friends from almost every phase of my life now check in regularly. I live where I grew up and went to college, so there is a social reconnection that has occurred among groups of people that is quite nice. In the last 2 years, we have been able to catch up and keep up.
A lot of people say, “if you have to get cancer, prostate cancer is the best.” They are trying to say something positive. I get over the feeling that I got punched quickly and do my best to keep a positive tone. If it goes on long enough, I explain things in a little more detail and share my thoughts.
How do you feel questions are also tough. My stock answer is that I am getting used to the way I feel. I have had setbacks but, at the moment, the numbers are good. The trend is my friend.
I am 6’4” and in good shape, I have lost more than 30 lbs since diagnosis, and I am told often that I look terrific. Most of the time, I say thanks and, “I can’t wait until tomorrow because I get better-looking every day.” However, there are many days that I say, “looks can be deceiving or don’t judge a book by its cover.” All with a smile and an explanation.
My older brother had Down Syndrome. In the ’50s and ‘60s, it was a common insult to call someone “retarded” as an insult. At first, dozens of fist-fights resulted. After a while, I came to understand it wasn’t personal. I grew up in a neighborhood of row houses in Philadelphia with a lot of kids my age. We played ball all the time. In time, the kids from the neighborhood protected my brother almost as fiercely as I did. I took him everywhere with me, and ultimately people in our sphere came to respect him and stopped using that particular insult.
I look back and realize that I am ashamed of things that I said back then when I didn’t understand how hurtful they were to someone, somewhere.
In sum, I choose to think people are trying to be nice.
It has brought back good friends I haven’t heard from in a while, and we are all benefiting.
Getting the words out of my inner dialogue and speaking them to others is helpful emotionally for me.
It sucks to have APC but, there are good things that have happened to me surrounding it.
I never use the word survivor. I am a warrior, and I am proud of the fight. I don't mind sharing it with people. It motivates me to fight onward.
That is how I trick my mind into handling emotions and social impact. For now, it is working pretty well.
Funny story: I was at Sloan Kettering waiting for a blood test, and I was sitting in the waiting area with a lot of other people. It was summer, and people were generally tanned and dressed in casual clothes. An elderly man walks in and looks around and announces in a loud voice, “I’ve never seen a group of healthier looking people in my life. You’d never know we all had cancer.” No one laughed.
I try to tell as few people as possible. I don’t want people to change the way they act toward me. And the few people who do know, the first thing they always say is, “You look great.”
Hi Gregg, you've certainly touched a nerve with this one 👍🏻.
Our youngest daughter calls this and other types of maladies " invisible illnesses " our grandson has diabetes type 1, everyone thinks he's fine, until they see the equipment attached to his arm, they don't whitness his Mum getting up three times a night to give insulin, or that he could die from catching a stomach bug 😔.
The problem is ignorance, looking at people's experiences here with the replies given, show how much we value those who love us and care, also we speak to a bunch of strangers on this forum, who know more about us and our ailment than most family members. 😄
I think we should have a competition for the most crass comment, I'll kick it off if I may, I had been about as ill as I could be on previous treatments, I really thought that I didn't have that long. But once on Zytiga, I felt much, much better, like us all only a fraction of what I was before, but I could do stuff.
One day the phone rang, unfortunately it was my father in law 🙄, I got the usual " how are you " and I explained that I was feeling better than I had. So here comes the crass remark. ...... " oh in that case, you will get the house finished then " 😠.
It shows how people think or don't which is often the case
What a rude thing to say! The most crass comment I had was from a "friend" of mine. I had just got done explaining that I had stage 4 prostate cancer and he said
"Well...I plan on living a long time!" Interestingly enough, a few months later he called to tell me he had a PSA of 15 and was concerned about it. I did everything I could to help him, but seems to me he is in denial.
Lots of great comments here. I am a member of Alcoholics Anonymous (34 years) and we use the expression that our Alcoholism is “Arrested, never cured”. I use the same idea with my stage 4 mPC. I take my medications (Zytiga) daily, just as I go to meetings 3x/week, and I go to my MO once every 3 months, similar to spot check inventory . I also get annoyed with the “you look great, we thought that we had lost you “ comments. A few friends ask sincerely and I tell them the truth about the fatigue, memory loss, and some of my fears. Thanks for all the great ideas here!
Most people say what they think we want to hear which are things like: "You look good" or "They are coming up with new stuff every day", etc. I joke about it with my wife.
My husband chose to not tell people for a while because he knows they will just feel uncomfortable and don’t know the right things to say. He said he never knows so how could they? I, on the other hand, as his wife, have told my close, confidential friends and appreciate their prayers. I totally understand though because they see he is looking great and then it feels like they don’t really feel what you are going through and tend to avoid the subject like it is gone. Cured. But I realize no one knows that hasn’t gone through it. They just can’t. That is why I find comfort in this site.
I agree. It's one of those things you can't really understand until you go through it. When I was diagnosed, I felt so profoundly alone. I never experienced anything like that before. People can only see the outside. They don't know what's going on in the inside.
I am so sorry, even I, as a wife, can’t possible understand. It is so hard. But we are a team. He doesn’t read on here. Maybe it makes him think too much about it. He doesn’t even talk to me much about it. I just go to all the doc appts with him and do my best. I take bits and pieces of all the advice everyone gives here and so much has been helpful. I am very grateful.
I couldn't agree with you more. My own son told me 9 years ago at my diagnosis, "Awe it's nothing and can be cured" Yeah right...It is managed not cured and no outsiders understand.
I know you received a lot of replies but I think there's another perspective to look at this disease from. I attended a Reel Recovery men's retreat a few years after I was diagnosed and that changed my view point. Talking helps not only you, but even more so the other 90% of men who know very little about the disease and generally ignore symptoms. There is no good reason not to discuss the disease. I do and I dont get special treatment. And I think I have helped people, especially the newly diagnosed men who wouldn't have mentioned it if I didnt talk about it. Sharing takes the weight off and helps others.
I've been an open book....it's all over my facebook page. Every office visit...every PSA...every Scan... I know people think ...oh, "he's going to die soon"...but, alas, some of the same people that have given me sad looks have died since I have been diagnosed and of altogether different things.
Life is not forever. We are not "permanent"....I prefer to tell people that I have a "shortened fuse"....I'm no different than anyone...we are ALL dying. (It's the only way out)
I think the majority of people treat this disease lightly because so many people are now caught early and treatment is successful.... Additionally it tends , for many , to be slow growing and the popular notion is that few people die from it....somthing else kills them first. This group has been an unpleasant eye opener for me.... even I had no idea how many exceptions there are to this general " rule "..... I don't take this disease lightly...
I agree. If you look up the 10 year survival rate for prostate cancer, it's 98%. I remember being surprised when I read that someone actually died from it. And here we are now, in the 2%.
Nobody has shunned me. Maybe they think they will get an inheritance. Probably be a lot of cursing at my funeral. Other side of that tombstone probably says "Sorry, I told you I was broke"
But last time I looked, nobody had taken a dump on your grave.
Not even tried to "water the weeds". Be grateful you had a grave. More dignified than just being sent to landfill.
I'll leave my body to science to cut up. I hope some young medical dude says to another, "this old bugger looked well for his age". Maybe they'll smoke me up a chimney, so I end up vaping the local ppl around for awhile.
One's grip on the real estate of a grave site is also limited to a number of years, and I have concluded its no use trying to be remembered. Sooner or later, a grave yard becomes full, and developers move in to build apartments. One way or another, the world says to you, "youse is nutting bro, and nobody bin to yo grave for 20 years..."
There is little known on how to ease the mental disquiet about death. But you could just deny it actually occurs. The ancient Egyptians were masters of this, and could get a body to last 5,000 years at least, and all these folks are still makin whoopy in the afterlife. And of course for those who ain't ever sinned in Heaven, there're all makin whoopy too, but remarkably, not one pair of love struck after-lifers has dropped a condom, or a vibrator, in the heat of righteous passion, because none of these essential items have ever been seen falling from above.
There are no gluttons in Heaven, so its most unlikely you will ever be hit by a huge bowl of spaghetti after somebody fumbles with it, while trying to down a heavenly pizza.
Patrick I have a feeling you have been left out of the loop. The World order has demanded by the year 2219 burials on Earth will be verboten. A procedure will be put in place where all dead people and their coffins (or wooden/plastic boxes) will be placed in spaceships and flown into the Sun's orbit to form a new ninth planet named CEMETARIANUS. This new planet will be run entirely by automons (no humans). The spaceships will be reused and fueled by wind and solar, thereby eliminating fossil fuel. At one point maybe around 2250 they will start digging up old graves and shipping them off to Cemetarianus. This will free up space for new condominium and golf courses. Therefore I would suggest that six feet under is out of the question.
Only one problem that comes to mind, is that they may start shipping out sick people too.
The strength of solar radiation is so piss weak at any 9th planet Cemata, ( no need for bigger name ) that returning space craft with solar power wood be difficult. But we all could be dumped into sun, bound to be well cremated.
Alternatively, by 2219, methinks any organic humans or other surviving organic creatures will be re-cycled. I suspect genetically modified humans will be become common, and with add on cyborg properties, and fitted with quantum computers for brains, which will undergo constant upgrading. I just doubt living to 200 will ever be possible with existing bio engineering by Nature. I suspect that in 100years some quite unimaginable changes will take place with "life" on Earth, providing we do have a nuclear war that may put us back to dark ages where Pca would be the least of anyone's concerns because of high mutations at birth caused by radiation, making it difficult for many to survive to breed. And what about 50,000AD? That's the same amount of time from when native ppl first came to Australia to now. But they didn't even bother inventing a wheel. So the rate of change to life in last 200 years has become so fast that in 50,000 years we just cannot imagine what future will be.
We just have not been yet able to meet with examples of life on other planets to compare notes, and stop being so careless and arrogant.
And we have not yet found evidence that a whole galaxy has been colonised by a single dominant species. Maybe we may have something to fear if that species paid us a visit.
Yes, but here, irritation by Pollies is mild. Voters can boot them out. Not all are bad, hence our Medicare which gives us virtually free EBRT, ADT, Cosadex, Zytiga, Chemo, plus all visits to specialists at public hospitals.
There are things that instantly kill Pollies, like killing Medicare, raising GST, or wanting ppl to pay property taxes or death taxes.
Right now, Pollies are expected to make big changes to policy on CO2 emissions but the present Govt just will not, beyond a pile of lies, because they know there is not any policy they could have which will make any difference to global warming and current continuing high number of bushfires, which look set to get worse during next 5 months.
If Australia had no CO2 emissions, and stopped all coal exports ( huge ),
Earth will keep on warming up, because we are 25 million in world of 7 billion.
Pollies are also expected to fix up the terrible care of aged ppl in care homes, but ppl really hate paying a lot of $$$ to pay for care for their aged mum or dad as many previous inquiries have shown, as well as the one going on now shows.
The properties and characteristics of the species 'Home Wrectus' leaves much to be desired no matter what examples of the species are examined or where they are located.
But if Aliens to drop in, and are whimsical about foreign Planet policy, one might expect a mass human extinction in seconds, and nobody would have time to kiss their bum bye-bye. Human history would just stop, without any fight or explanations needed by aliens. They might bring a great big Hoover vacuum cleaner and suck up Sun, Earth and all planets then bundle it all off to recycle it somewhere else in their Galactic Empire.
If I detect any dismissiveness in others I usually find its not a great deal of benefit in having much to do with them. Pca is one such thing where some other men find it interesting if I explain what I have been through so far, but continue to think everything will be fine, when of course it won't be. Some men just don't like talking about health issues at all. I meet so few women I just never bring up the subject of Pca. But one sister died of Oa, other got Brca but survived, so I heard a lot from them while they suffered from treatment, and never did I say they'd be just fine in future. Its lying. There are times when I think my bicycle offers me better friendship than most humans, and I didn't get around to having kids, so I had no experience in common with those who were fathers, so a having a long list of friends I see often is not part of my life. There are no women friends at all.
Only my older sister is a close relative, and we get on fine.
So I have had an enormous amount of time to conclude that what you think is "difficult at times" is the very tiniest of my concerns, I kinda DGAF.
Unless other ppl have had a fight with cancer they may find it hard to feel any empathy. So its boring for me to talk about to talk about it, unless they keep asking questions about it. Remarkably, there is not a huge number of ppl who are great converesers who like to explore the meaning of existence, or anything above basic domestic issues.
So, it all Duzzen Madder, OK, we are alive, then dead, and any one of us ought to be able to occupy ourselves without assistance from others where possible, and still find life worth living. Any one of us is going to extremely lucky to meet others with the same special interests we may have. Its a different world to when I was 25, when single, and every woman who I thought looked well enough was also worth exploring, and having mates who rode motorcycles meant fun on weekends, camping out, and there were work friends. Once old, all the pleasures of youthful togetherness vanishes. Several times I cycled in Sunday ride groups over last 10 years. Nobody seemed able to be friendly beyond the group ride unless they happened to also work together. People are islands, or they erect high walls around themselves, and despite all the efforts by Zuckerberg to get ppl to be close, and happier, I found his efforts were just as much in vain as were those who ran the online dating groups.
So unless anyone puts some effort into writing carefully to friends then maybe you won't have any friends at all.
Meanwhile, my bicycle thinks I am doing OK after having Lu177, my Psa is now 0.32, was 25 before I began this treatment so I might be around for some years yet.
I really do hope all those who are suffering with Pca get better soon, but I know some of you will not, and I do hope the care you get will ease the discomfort.
Gregg, You hit a nerve. What a great set of responses. I have not seen a thread this large on the site.
I fall way over on the spectrum of being open and telling everyone what is going on. I do not think it is a big secret that advanced cancer is impacting me and I hope I can keep engaged with my many friends.
One thing I find myself doing is when someone asks the question "How are you doing"? I quickly decide is this perfunctory question or do they really want to know. I am always prepared to answer either. You develop a skill set for how to sort out those who really care and are interested vs those who just feel obligated to ask.
Many people on the thread have answered quite well, especially when you lose your hair and have very little energy.
The only times I have had tears was when we met with Palliative Care and planned how to be realistic in our conversations with our three adult children. When we did those conversations they were also difficult but necessary.
Colorado has a Medical Assistance in Dying law which I intend to use if and when the time comes. The discussions with the kids were hard over the reality of my mortality. We were assisted by a social worker and have had great support by our pastor.
As it turns out after going through the depths, I have responded and have been off chemo for 15 months. I am enjoying life to the fullest as I am able. Physically somewhat restricted from vigorous activity but enjoying every minute of living.
For me, this is one of those things that kind of stays in the background because I'm focused on trying to stay positive. We want people to understand what's going on like we do, not make light of the situation simply because by all apearances, there is nothing wrong with us.
When someone says something like "Oh everything's going to be fine, you are doing so well." I find myself worrying about not wanting them to lose hope. You don't want to sound like a pessimist by explaining the truth. I've explained it and had people say things along the lines of: "Don't think that way." or "You can't beat this" It makes you look like a doom-and-gloomer to argue. This is what makes it so frustrating sometimes.
I'm glad you brought up "Death with Dignity" (that's what we call it in California). I was just discussing this with someone yesterday, explaining that I expect to be treated at least as well as dogs and cats are treated when they are suffering needlessly.
The main thing with this is not waiting until you need it before trying to get it. Don't know the Colorado law, but here in California you need to be within 6 months of death before you can apply. Since the process takes a couple months, that doesn't leave time to waste. I'll have mine on the shelf in case things get unbearable. I've shared all of this with my family so they know where it's at.
Complete acceptance of death and fighting with everything to delay it are not incompatible.
I will have no problem getting the two doctors to sign for the medication. Six months is always a guess but we talked much more about how I define Quality of Life and when that quality is no longer acceptable for me. We have been to Hawaii twice in the 15 months since I finished chemo since it is my wife’s “happy place”. Also did a Bucket List trip to NYC to hear two operas live at the Met.
Our conundrum is that my wife also has memory loss and has been diagnosed with early Alzheimer’s. She is adamant about wanting to be in charge of her end of life decision but she will not qualify under the Death with Dignity law since we won’t be able to get the 6 month prognosis. Exploring non-violent options for her but she is very high functioning right now so it is hard to do.
In our ideal world we would go out at the exact same time. We have known one another for 73 years (since kindergarten) and were friends long before we were lovers. She has been a rock of support when I was in the depths of this disease so I am working hard to help her with her diagnosis as well.
No simple answers to complex problems. Every new day is a Great Day!
We really didn’t have a choice bc when Joe was diagnosed he was hospitalized and in ICU for three weeks- not sure if he would pull through. After about a week people started asking questions so I just put it all out there and it’s been the biggest blessing. In the two years since he has had friends come see him that he hasn’t seen since college or even high school. His friends don’t feel sorry for him- they genuinely just want to reconnect and it has brought so much joy to him and me too being able to witness it! Our family has never felt so loved and supported and that is a whole other pretty incredible feeling during what are often very painful times. Also, because we have young children- I have to imagine there is comfort in seeing our community rally around their dad.
That all being said- he also looks great- even on a crappy phase two trial after being hospitalized twice in the last 14 days. I appreciate when people tell me that...and sometimes it feels like they don’t really “get” it and that can feel frustrating. This is going to sound terrible and I appreciate that my husband is prayed for- truly it is really meaningful- but every time someone says they are praying “for complete healing” I kind of want to scream...bc again it just feels like those people don’t really understand. Anyway, there’s the good and the ugly of my thoughts about it- not always pretty but they’re real!
I am open about my cancer as I find out frequently that I am not the only one suffering from this cancer or other types. Then we have a good convo on treatment, stages, docs, etc.
When those that do not have cancer or understand this cancer tell me I am past this or I will be fine I respond "I have been very lucky so far. My cancer has recurred twice; I am hoping and praying that it does not recur a 3rd time".
This seems to work for me.
Thanks for bringing this up it certainly can be frustrating.
I tend not to discuss it anymore. I thought I had news when I shared it with people. They would always come back with some medical horror story of what was happening to them or someone else. It got to seem like a twisted competition, of who was sicker than me.
No one knows what it feels like to have this ticking time bomb inside of us except us ..... unless you’ve been there it’s hard to fathom ... My mo is the same ...says “ you look great”! My bloodwork is great ..he says better than most people even himself... I think I’d rather feel great than look good .. I don’t think I look so great either . But to doctors that see so many patients going down in flames I can understand their opinion . My mo says that he’s got 100 guys that want to be me ... whoo hooo , I’m a winner .. My mo also told me a couple visits ago that “ I’m cured” ....I am happy to be doing well . However I’ve felt like shit every day for almost five years . I’m still on adt .. Nobody except our partners or spouses see the daily grind on us by APC and its treatments ... Live for today ! Tomorrow is not promised to anyone ... Frustration should be capitalized in the APC handbook . Take care ...Scott
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You hit the nail on the head.
"My mo says that he’s got 100 guys that want to be me"
Yeah right! That's funny. There's probably 100 million guys that DON'T want to be me! I wouldn't blame them at all.
The argument that it "could aways be worse" is the kind of thing someone who doesn't get it at all would say. That's why this board is so important. All of here have first-hand experience. Thanks for your contributions!
My MO used to say I looked great. Wouldn’t even consider me for SSA disability. But as I go through treatments that eventually fail I don’t hear that anymore.
I wish doctors wouldn't make statements like "you wouldn't qualify for SSDI" when they clearly don't know squat about the process. Mine said the same. Wrong! I wasted almost a year before I found out I could be have been approved. They ended up approving me all the way back to diganosis, proving my doctor was wrong. My life would have been way less stressful without the bad advice.
I was self employed and still working with no problems making good money. My own lawyer knew that would be a problem. 10 months later January 2019 I retired at 64. In reality that extra work time provided me with a lot financial stability until I make Medicare starting next month. I was able to prepay our health insurance for 2019 and 2020 for my wife. The difference in the social security payment was not that big difference between 64 and 66. It really became a financial decision. If I felt then like I do now I probably would have gone with the SSDI.
Thanks. I'm in the same boat as you. Treatments work until they don't. We all are going to have to just do what we can until we can't. It was always going to be this way, we just didn't know it.
As of now, I am enjoying the remaining days I have left.
Cheers and thanks for everything !!!
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I can relate .. I’m on ssdi and the doctors are no help with that .
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Im saying that to be grateful for any good news or reports is important . The reason that I am saying this Is because here on hu I’ve seen many fine families go down in flames over my 3 year’s reading ... APC gone wild is a bitch .. When I wake and I don’t have any brutal pain ,yes I’m thankful . I came from a hellish position with APC eating me quickly upon dx. I’m lucky to be alive . Therefor I Thank God many times everyday ,especially on the bad days .
Gosh. I've told some they may get a little money, so the bank doesn't keep it. But all in all, I think they would rather have me than the money. My home is humble, and those I'm leaving it to are probably a little restless. Just a little laugh here, cause me and wife were always late to events. I hope I drag this out a long, long time. Enjoy those western skies, and hills!
I was having a good time at a party when an acquaintance, who I had just met that night come up to me , she said very seriously, I heard you were dying! Talk about crashing!
Lg completely isolated himself from 2003 until the present time. Only just recently did he start to talk or do something here or there with one or 2 friends. I think his friends would have been good for him.
I've been an open book....it's all over my facebook page. Every office visit...every PSA...every Scan... I know people think ...oh, "he's going to die soon"...but, alas, some of the same people that have given me sad looks have died since I have been diagnosed and of altogether different things. I'm 62...it seems this is the time that people around you start "dropping" for whatever reason.
Life is not forever. We are not "permanent"....I prefer to tell people that I have a "shortened fuse"....I'm no different than anyone...we are ALL dying. (It's the only way out)
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That got people's attention in a visceral way that words don't. It's one thing to hear "metastasized to bone" It's another thing to see it.
Don't Forget To Check Your T3-T4
Take Care of Your Support Group
Would it work when we go back to the old treatment again? Your input would be appreciated.
Anyone taking Orgovyx (ADT)? If so, how do you compare your side effects to Lupron?
