Good morning to you all.
I would like to hear from those who are fighting this disease alone? No spouse or children near by to assist with every day challenges or someone to talk to...
How do you do it all alone? - Advanced Prostate...
How do you do it all alone?
Written by
Ummer67
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55 Replies
•
I luckily have wife of 41 years. Burn up those phone lines to best friend.
Hi,
Early on in #stageivpca diagnosis in 2015, I had a ton of family support. Kids, friends came to chemo appts. Lotta msgs of support. Last couple years that has declined. Most of my dental patients don't even inquire any more.
I do have PCa info at reception desk of the office and occasionally a new patient will comment.
It's a tough road esp on ADT to be alone on.
PM me and I can give you email or cell phone # if you wanna chat. We can also message on this forum too.
My best to you Brother
Randy
I live in my own world. In my world nothing truly exists. I can feel myself slipping into madness. Sorry for such a depressing reply.
Mrkharn• in reply to
Thanks!
• in reply to
😂😂Par for the coarse around here brother. No apologies ! Everyone can step into madness and depression . Just don’t get stuck there too long or let it crush you . Reality ! What a concept? Who was it that said “ we all live lives of quite desperation “ and that’s people that don’t even have PC . Let it out here on HU .... it’s therapeutic and most of us can relate . Be cool Fran2020 .. hang in there .. Scott
Dett• in reply to
Henry David Thoreau - “The mass of men live lives of quiet desperation”. I’ve always found that saying incredibly haunting. I spent today at the hospital with my husband (insertion of gold fiducials in preparation for radiation), and it really helped ground me to recognize that as bad as our situation may be (stage 4 PC), there are people who have it much worse.
I spent several years in my twenties seriously ill in a new city with no friends and no support, not even a way to get groceries. It was excruciatingly lonely and pretty desperate. The internet has been a godsend for practical necessities and companionship. Please try to connect with a support group where you are. People are generally kind and want to be of assistance, but you have to let them know that you need help.
• in reply toDett
Thank you! I found it hauntingly truthful before pc . Fiducials ? We remember that day.My sweetheart watched on as my uro put them in. There goes all modesty and inhibitions. I was in bad shape with tubes and a foley . The good new s is it put me in remission and all tubes out . Good luck proceeding . Keep him up and active even when he has fatigue . I felt like Rip Van winckle after Rt . I had pretty crazy chronic fatigue syndrome. My wife would get me up . I too was #4 and thought myself dead. I overcame much with love and support . I went from 233 with muscles to 165 and faint . I’m at 195 now. I stoped all sugar animal proteins and processed foods. It was difficult after a life of eating pretty much everything. I did this all under a naturalpathic Md. I ve been in remission over four years. In the eye if the storm so to speak . Your story of your twenties brings tears to my eyes. True ! There is always someone that has it worse off . Please be positive now that he will get to a better place . Keep the faith in what you believe . I’m happy that he has your strength yo depend on . My wife is my savior despite my behavior . I pray the he goes into remission and puts pc to rest for many years. It all a real flap on the face ... once he’s having good news you can take a breath . In the meantime be healthy yourself . You are needed. I ‘ve prayed in hardship my entire life . Since APC I’m in constant prayer and praise god for each day above ground . I pray the he survives this and that you become closer than ever to each other . Losing the male hormone has its own form of cruelty for us guys. Hydration good clean water is so important .. For him .. Best wishes 🙏🙏🕊 Scott .
Dett• in reply to
Thanks for the support. Your wife is stronger than me; there is no way that I could watch that procedure (yikes!). We’ve improved our diet substantially, but vegan is just too hard. Don’t know how anyone can do it. My husband has been on Eligard for several months, and his PSA is down from 70 to .14. We’ve been lucky - very few side effects, just some fatigue and a significant loss of muscle mass despite exercise. Next up - Cyberknife and IMRT. That will be a logistical challenge commuting from Fairfax, Virginia to Washington D.C. for over a month (1 - 1.5 hours each way), but I’m grateful that we have excellent insurance. I gather that radiation is somewhat controversial for oligometastatic PC, but after significant research it makes sense to us. It really helps to hear positive outcomes like yours. Best wishes for your continued remission!
If you’re referring to commuting for imrt, don’t do it. Get a room. Contact American cancer society for financial assistance
• in reply toDett
My wife is stronger than I .. She saved me from the abyss .. I lived in Springfield Virginia as a lad .Dad commuted to DC each day . That was 54 years ago . I can’t imagine the commute today? I don’t know why they let her watch ? But they did . Keep that psa down and good luck in treatments .. although in remission unfortunately the nature of APC is to return . This makes any time with good numbers all the more valuable . Take care Dett .. 🙏🏼
I’ve found comfort from my dog. Keeps you active and your thoughts on something other than yourself. There are many opportunities in most communities to foster a dog if you’re reluctant to adopt.
• in reply to6357axbz
Dogs rule !
I did it alone. Although I had family and friends call me, I did the research, appointments, decisions, appeals, treatments by myself.
I just had never been a sick person until then (2015)!
After a month of digesting the bad news, and starting to think about options, I had a humbling experience at work.
I remember it it like it was today. my co- worker said”you look tired”. For just one moment, I sat at my desk and had a good cry.
Unfortunately doing it without a copilot, I made a few mistakes but the prognosis is good. And strangely enough my best friend in another city had this disease and it gave me an extra level of empathy. And so on and so forth so there’s good and bad.
So good luck to you and you can reach out to me at any time.
Mark
Hi Mark,
Has your cancer become metastatic? I was wondering since you stated that the "prognosis was good"?
• in reply toMrkharn
I too was never sick until 2015 ...my family and most friends bailed on me upon dx. I married an angel thats saved me with Her love. I also got a puppy ( another love ) . As long as you have interest in life it can be good. I think a guy must be super human to go this disease alone. Find love , for me it’s essential to life . I have a friend living with APC still a bachelor and he’s amazing to me . Depends on ones character . I understand going it alone in life .. been there done that . I always went it alone before APC . Now I like companionship and accept all of the help that I can get . Its the wife the dog and Me .
Doseydoe• in reply to
Me too, the wife the dog and me, sounds like a good line for a song. Doing this alone would be tough as my appetite is not the best and making dinner just wouldn't happen so my diet would not be good. Hats off to you Ummer67 hope your looking after yourself... regards and prayers for all DD 😎
• in reply toDoseydoe
A great video of hank jr floating down the riverOn a barge a line from “Bocefus “ Hank jr. ...”A country boy can survive. “ official music video YouTube I live back in the woods you see, just the woman the kids the dog and me” “and if you like that one check out blackberry smoke “ ain’t much of me left”
Poignant words for pc . Basically saying “ I’m Still here”!
Be well hombre! Scott🌵
• in reply toDoseydoe
My wife is a gourmet organic vegan chef . I’ve got it made . Lucky mf.
• in reply toMrkharn
Very strong you are! Right on ! 🤙🏽
Though i have a loving dedicated life partner (wife) my philosophy revolved around the fact that In life we have to carry our own cross. If pain is there, meds are needed, if sadness is there, change of thinking /meds are needed, being logical and facing reality and finding real solutions is key.. Loved ones and friends have their limitations and they can not do much as they have their own problems and they feel helpless. This site is my support group and I enjoy it.
And a very good morning to you, with strange name Ummer67.
I lived a greatly nice life after becoming a self assured and confident male adult, but I was spectacularly unsuccessful with choosing the right woman and having a family. It seemed that the nicer I was to women, the more likely they'd say "thanks, very good, but I feel so good after being with you I could slay the world out there full of better men than you."
Never once in any woman's mind did it seem to occur to them that staying with me would be better than pissing off down the road or across the seas to find out what was findable.
In 1993, when my youth had faded, a female doctor of about 70 asked me if anyone valued me and I had to think hard for a minute, "Ah yes, my customers." But I was wrong with that answer because I'd left the building trades where customers happily paid $30 per hour, and switched to electronic repairs where customers were unhappy paying $3 per hour, even though they got paid $20 per hour at their Govt office job sitting on their arse.
I then realized how easy it was to slip through 50 years of life and nobody wants you except for the work you do. Love seemed to be a 100% fraudulent concept. I stopped short of thinking I hate love, which was the emotional condition I discovered which existed in some female minds.
There was never anyone who could explain exactly why I never found a suitable partner who would have brought joy to me, herself and children, had she wanted to go "all the way"
Finding a good life with supportive family is a bit like finding good Pca treatment. You are limited to what is available. Its the same with women, you are young and handsome for awhile, and a man must adapt to who he finds, but it seemed to me that after awhile, the women could never adapt to a man, so he had to go "under the thumb" and become a slave, and over the years become castrated by married life, and this might be fine for domestic bliss but for the fact that women change their mind every hour, and they hardly know how to be a fair and good queen in a simple working persons home.
In my 20s, I worried about ending up alone, and how I would cope being a failure. Well I have arrived at 72 years old without anyone and its really quite OK. Nobody is there with whom I will be forced to argue with every day, and there are no kids of 30 commanding me to sell my house and give them 1/2 the dough to buy their own.
I worked my guts out to fund myself, and the next generation better work just as hard as I did before I feel generous.
I find that so many ppl my age are dysfunctional in many ways, and so are many of their kids who have become schizophrenics or useless lay-abouts, do littles, whingers about all things, ungrateful and uncommunicative, so what's so good about having kids?
So you ask me how I cope with Pca? Very well, and am doing just fine to live with what is a chronic condition likely to kill me eventually because nothing else will.
Today, I cycled 30km across town to a cafe after taking less than normal time to do this
which means my fitness and strength is better after a couple of months that were horrible, including a gut blockage that had me loose 8Kg in 11 days. I felt 27 today. There's 45 years difference between being 27 and 72, but I had a real good day. I felt supercharged on my bicycle, and enjoyed the total of 60km. I've emailed friends here, I've done work on new web pages for my website, all to share existence and I don't care that there is no meaning to all this. Really, why is anyone here on Earth, why does our universe exist? What is infinity, eternity? Its quite ok that we don't really have a fully understandable reason for being here. Fact is, we are here, so better be nice, good to others, enjoy wonderment of being alive, and not be too serious, and then you can face enemies like Pca and not fall to bits.
I have lived with Puff The Magic Prostate Grenade since it began in about 2004, but not diagnosed until 2009, and life could have been much worse, but it just was not.
Every day is not a challenge, its just lived.
My dear Puff has tried to explode, but doctors have come to my rescue and stopped the damage being too bad, so I live on, always knowing this may not continue. If I have to die, I will, and alone, and hold one hand with the other. What is so terrible about that? I have seen others go the same way.
Patrick Turner.
Peace be with you, my god be your companion on this journey
The phone goes both ways, are there any support groups around you ? Nothing else go visit your kids if you can, time is short it might surprise you the reception you get
Hi Ummer, are living on your own and dealing with PC? R/ DD 😎
Hi, this is my second round of stage 4 cancer..my first was head and neck...I had to feed my self with using a stomach tube. My daughter was 200 miles away with two very young children and is an executive with a large bank...I did have a niece a half sister a sister in law and a stepmother close but never saw them....I always said since I was young that I have my self for friend number 1...I lost my jaw due to medical malpractice and just received an 8 figure verdict....guess what my friend? everyone is now so concerned about me...My daughter and my sister were there for me when they could....so they get matching Range Rovers...the rest maybe a box of pasta......I am still and will remain without a human mate...I have Gracie now for two years...she is a English Flat Coat Golden Retriever. I am an Angel Flight Pilot started flying after Haiti after they suffered the earthquake a decade ago....Gracie flies with me , paddle boards with me and is with me 80% of the time....I would suggest you get some type of animal that gives you comfort....It does not have to be a dog...I had a giant cat who was with me when I struggling from my first battle....she would lay on my lap, or feet or just be close....Gracie takes a lot more work but a lot more fun.....I get up due my devotional reading and start my day on a Peloton....lift weights ...and I am staying busy each and every day....Have a good set of friends, hang at my office at the airport. When I take Gracie to the Mall everyone stops to talk and pet her....I do not mention my condition because pity actually makes be feel worse....I am just on the threshold of being metastatic because my numbers are climbing on Lupron/Xtandi ....so who knows ....My friend keep your chin up and find exercise, a hobby, an animal, and screw the ones who are too busy....If you want a lot of attention win a 8 figure verdict....It is absolutely a F_ _ _king Hoot the last week..I get more text and calls from the family Buzzards. "starts with Hey Uncle Dave how are you feeling? then ......oh we are ok (the buzzards) then gosh we may not be able to pay tuition, buy clothes for the kids, make a house payment........holy shit.....this is fun!!! Well today you can read the post I am on my way to the airport ....Blue Skies ,,,Sky King and Penny (woof)
I have never been married and my family (brothers and sisters) do not live in my area. I went through surgery and salvage radiation on my own. Have to tell you that it wasn't that big a deal. I can't comment on metastatic disease - haven't been there yet and I hope that I never have to find out. I was always disinclined towards the whole marriage and parenting thing so maybe I'm an outlier but I've always been comfortable with my own company so I'm used to getting through things only depending mostly on myself. Logistics can be a challenge at times but there's solutions for that as well. I do attend a monthly PCa support group which I found helpful for informational purposes when I was first diagnosed. At this point its more about sharing my experiences with the newly diagnosed to help them navigate the treatment decision. I will say that I've met guys in that group who are a lot worse off than I am so that has allowed me to have a better perspective on my own situation.
That's what we are here for..support.
I wish I was alone. I was engaged up until right before the diagnoses. She got her breakup in right before the cancer thing started a little over a year ago, but due to a housing situation is still living with me. So I got to go thru the worst of the treatments living with someone who doesn't have a very high opinion of me. That was worse that being alone I think.
Now I am feeling better and even on Lupron am out looking for love. However I am finding that, not surprisingly, most women I have dated so far have a big problem with the whole "living with your ex" thing, so she is still screwing with my life.
I used to be pretty much a loner, but for some reason the cancer changes all that (think someone above mentioned that as well), but sometimes nobody is better than the wrong person.
Hey dude, it sounds strange that you are living together after breaking up. I couldn't do it😕 You must still love each other so perhaps the PC is bringing you closer together. It's having that effect on my 18 Yr marriage. It's like the little pety things get put into perspective and we seem to be having fun again. Like we play scrabble more often, go for walks together and generally seem to be making better use of our time. I hope things improve for you both and sometimes, flowers help. DD 😎
Dude WTF???? I have a close friend and he once said....Life is stranger than fiction....you prove the point! Blue Skies
Actually it got a lot weirder this week. One of the major hurtful episodes in my life was when she was not available to go to the Dr with me to get my diagnoses. Guess where I will be tomorrow? Sitting in a Dr. office with her while she get her breast cancer diagnoses, which she already know has some level of cancer in it. So I will be there giving her the support I am still pissed that I never had.
Basically this situation was dumped in my lap and I felt I had the choice to be the dick that I earned the right to be, or the bigger person. I chose the latter, but really you can't make this stuff up.
I have had many relationships over the years, married once and I have a 22 year old son who I see several times a week. The problem now is that being on Prostap hormone therapy there is no drive any more. I'm 52 years old and as I am advanced CRPC with first met in pelvic bone I suppose I may be on ADT forever! Still I'm happy enough and feeling very good. Trying to get back to a good level of fitness now after feeling great on a vegetarian diet.
Gday mate, I too have lost my drive but as my relationship had been platonic for a few years before my diagnosis, Stage 4 GS 9, it's worked out OK. A silverlining in an otherwise all round shitty situation. Hang in the brother 😎 DD
I play golf with a good friend who is quite wealthy....his wife is a B...was, is now and always will be...she is just plain rude....anyway we are in Cashiers NC one summer playing golf and he is 10 years older than myself...I was pre cancer and full of myself and he stated a truth that at the time I thought was a very strange comment ....He said " David,,when I lost my libido I felt God has set me free"....I now understand...Blue Skies
I am pretty much in your boat. Have some friends but no one real close and found out early that they shouldn't be burdened with my difficulties knowing that sharing my problems may and did understandably alienate them. Now 4 years since diagnosis and 3 years of Lupron I quickly learned that PMA (positive mental attitude) and activities and self-control allowed me to successfully traverse the hilly path to the present. Fortunately I had habit of daily trips to LA Fitness for years -- which continued throughout the treatment. Weights lessened and cardio time shortened due to low testosterone and fatigue but I went daily -- varying workouts, but went at least 13 out of 14 days. The greatest advantage of this addiction was meeting a number of people overcoming personal problems including 5 friends there with APC also.
Now my new fitness friends and all my social friends are telling me how healthy I look; and I can feel, what was 6 months ago was a nurf ball, a firm bicep.
Whether we have family or only friends, self-support has been the answer for me even though it is not for everyone. Looking back at 42 radiations and Lupron I am blessed to have APC on hold at 76 years, alive, and remain active.
Ummer...and everyone else. I'm pretty much in the same boat, which I row by myself. One aspect that I didn't see: HELP SOMEONE ELSE. Whether it's being active in a support group, phonecon with other guys or anyone you know who has a problem (don't we all?)--or even start your own support group--and it doesn't even have to be about prostate cancer!
This post is timely for me, as it has been difficult of late to move out of the ADT fog - despite pushing the exercise and watching my diet. In many ways, we all fight this alone - in my experience, most people (including family and friends) cannot fathom the very deep ways that our treatment saps our zest for life.
The actual emotional quality of our life can often be perceived as...how to put this...poop... when compared with who we used to be prior to diagnosis. If there are major life changes in addition - other illness, death of a loved one, divorce, teenagers leaving the house, etc. - these only amplify the effect. It is no wonder there is a natural tendency to withdraw.
But emotional and physical isolation kills us. I believe that it is only through stubborn determination to interact with the world that we can achieve any sort of quality of life.
You need to seek out a local support group that has peers for your dad. I also suggest that you seek one out, too, so that you get some ideas from others in your situation. Sometimes we - the stricken - aren't the best guides for you. We simply "do" and don't know how we do it!
Good luck.
I have no wife or children. One good friend that I talk to daily.....helps. On balance though, this is a solo trip for me.....NOT pleasant! Send a phone # if you need someone to talk to in real time.....otherwise make liberal use of this forum....these guys have seen and felt it all
Bob
Just noticed that you are writing on behalf of your father.
Still happy to talk in real time if he likes....where is he located?.... Is HE worried about how he will cope? Has he been treated yet? Any details to share about his objective status?.....is he interested in joining us on this forum?
Greetings Ummer67.... get him a blow up doll..... maybe a blow up dog too..... Post here!!!
Good Luck, Good Health and Good Humor.
j-o-h-n Tuesday 02/18/2020 7:58 PM EST
I certainly understand the difficulties of being alone to face the day-to-day challenges of prostate cancer. That would be tough to imagine as I, personally, am now sharing an apartment with my ex-wife. Something that couldn't have been possible previously.
If there's one thing that I could say to you, it would be to find a local prostate cancer support group or cancer center that has regular meetings where you will be able to talk to people who fully understand exactly what you're going through. If one is not available, I would definitely recommend a church or synagogue or other place of worship. I'm not trying to offend anyone but any way that you can be able to share your thoughts and meet friends who care will help you through this journey. If you're able to, play golf.
Good luck
I am not a church going person, but I really kind of reached the end of my rope last summer.
Not wanting to actually go to church I started reading a local church's bulletin online, and there was a request for help with a soup kitchen. I never joined the church, but now I help out with the soup kitchen and I feel pretty damm good about it.
I have found that involvement and staying active in church has been for me, truly, a wonderful support system.
Hi:
When you say fight, I don't know that really means? Do you have advanced adencarcinomena, metastasis, PSA?
I've am 1 year post RP with a 25% to 30% chance of recurrence.
I went it alone. It was tougher than anything prior. With diet, yoga meditation and exercise, I had and continue to have a subtle but real transformation in process.
I may sound corny, but I feel a spiritual presence that helps me know and give of myself. I would prefer to have deep caring loved ones to support me. This is my path.
I am unmarried and have lived alone since my late teens. I learned decades ago that I am truly alone, during a severe bout of depression. To say that living (ok, just existing) through it made me stronger (therapy 3 times a week for 5 years, until the money ran out! helped me integrate my whole self for the first time) may be cliche, though it’s true for me.
12 years later I had a heart attack aged 52. As I was living in the UK more than 100 miles from any relatives, I didn’t involve them.
They found out months later, not too happy about it!
I returned to live in Ireland in August 2018, aged 59 having been made redundant. Had a PSA test and DRE in November 2018 and could tell from the doctor’s inability to look me in the eye after the DRE, that prostate cancer was on the cards. I resolved to keep it to myself until I knew the full extent and the options open to me to decide upon. I did my own research at my own pace.
Once I had decided upon EBRT with neoadjuvant ADT, surgery couldn’t be curative; I informed my family.
I had learned that life couldn’t give me in any one day, more than I could handle, in any one day, so being alone or on my own is simply not an issue.
I couldn’t handle all of my depression in one day, so I didn’t.
I couldn’t handle a heart attack in one day, so I didn’t.
I couldn’t handle redundancy in one day, so I didn’t.
I couldn’t handle prostate cancer, it’s treatments and their side effects in one day, so I haven’t and won’t try to!
I know how to ask for help, I know when to ask for help. I know when to get on with it, on my own.
I regularly ask for appropriate help from appropriate people. I have received great help here on this site.
I live in relationship with others, that’s how I live a good life, but I’m responsible for me, no one else is. I don’t live expecting from others (they’re busy navigating (or otherwise) their own lives). I’m always delighted to receive help when I ask for it; I’m delighted to provide whatever help I can, when asked. I’m not shy to ask if help is needed when I observe suffering.
Being alone, in relationships is normal and ok.
Being in my family, well you’ll have to wait for the book!!!
Take care of your self and other selves that you encounter along the way.
Today was day 5 of 37 fractions of whole pelvic radiation. It was a boring day, I’ve taken to observing as much detail of my linear accelerator as I lie down for the 3 minutes per day to be irradiated. They even have names for the machines, I’m on Boyne mostly. Note to self, get out a bit more 🤣🤣🤣
Oh I can’t handle my family in any one day or lifetime, but better they don’t know that!
• in reply toAodh
They say that God gives us friends to make up for our family . My family bailed on me . I too was beyond surgery . A terminal case . So to speak . Idid 8 weeks five days per imrt . Fatigue was an issue near the end . But I had issues that you did not . Live healthy . I grew up sorta a loner . I understand it . Good luck with the Rt . May it serve your pc a ticket to the void . Be well
Aodh• in reply to
Thanks. I’m nearly used to the fatigue from ADT, but appreciate that with RT I’ll get even more. I’m lucky, a local cancer charity will ferry me to and from the hospital in the later weeks. I don’t think that I’d be safe to drive the 130 mile round trip then.
• in reply toAodh
Any help is appreciated ... that’s a long trip .. take care
Find love . A pet ? Make friends . Don’t isolate yourself .
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