I just cancelled my upcoming appointment for next week. I am also due for Lupron infusion. How do I tell my well meaning MO that I will not be taking anymore infusions. I have been on it for almost two years this time. Why am I doing it? Because I feel miserable, the hot flashes, the sweat especially at night in bed, the complete lack of energy, I feel horrible having lost a muscle mass yet gaining weight to 200+ lbs which I have never been at. I am sick from being sick and getting up three four times every night to pee. I can't take it anymore. Also, I just had a round of focalized radiation and did nothing for my back pain. I know MO will send me to RO to do it again. I refuse getting exposed to, the SEs. The last round of radiation were unbearable. How do I tell him?
How to say it: I just cancelled my... - Advanced Prostate...
How to say it
Tell him that *lutamide monotherapy yields better results than lupron alone. For Enzalutamide there is already published data, for the other two, trials are underway. 1st gen Bicalutamide acts as dynamite in my personal case, with zero SE, but I am at an earlier PCa stage than you are.
Sorry to read your experience has been abysmal.I'm not sure if switching to mono enzalutimide (Xtandi) is an option for you. For me, at least, the QoL has increased. I'm not one to suffer the extreme SEs to begin with and not taking the Eligard and only taking the Xtandi has been a game changer for me. It can't hurt to have the discussion. The EMBARK trial showed mono enzalutimide is superior to mono ADT.
my previous MO was really bad. He never communicate within team. I started making list of all side effects and make a sure to get the answer and resolved on immediate basis. Many times you need oncologist who ready to work with you and reduce the side effects
You simply tell him you've had it with the Lupron and quality of life is more important...I know exactly where you're at (you left out the no libido)...Yes, ADT (Lupron) will keep you alive, but at what cost?...Also I guess it depends on your age...I'm 85 so I look a things differently...Maybe if I was 65 I'd do anything just to stay alive, but in my case I've had a great life, and my wife and family are taken care of....So I just want to feel as good as I can with the time I have left...There's other options out there and you need an Oncologist that will go to bat for you....Remember...You're always in control.....Good luck!
You tell him that you know you will be crippled and in much worse pain, but that you would rather suffer and become immobilized than suffer the side effects of ADT. After he knows that you understand the trade-offs, he will probably refer you to a hospice.
I would like to complement TA, who just speaks out loud what you have to expect, if you stop ADT. Don’t do it is my advice, too - you will most probably suffer much much more! So what to do? Continue ADT, maybe in a different setup - your doctor will advice. And in addition to ADT: get rid off junk food (if you eat some), switch to a plant based diet with fish. Reduce fat, sugar, alcohol and sugar loaded drinks. Start to move. If you can only walk, walk. If you can lift some weights, do it. Start low but start! Don’t throw your life away, please!
Ouch. Nothing quite like straight talk to bring you back to your senses. Thku TA. It needed to be said.
Yep, some people suffer real bad.
It's quite simple really. It's your body, you're the one who has to live in it. It's your choice whatever.
Just smile and say no - that's all you have to do. If your minds made up and you're determined not to continue anything, just keep calm smile and keep saying no. Simple.
If you want to avoid confrontation, you could say 'I'll have a think about it' or 'let me get back to you' and just leave.
A professional medical team should be there to help you the best that they can but you get the final say - not them.
Just be sure that it's definitely the path you want to take.
I have had this motherf*cker 19 years. This “round” I have been on Lupron for 6 years. I asked my MO if I am hormonal resistant, WHY am I STILL on Lupron? Since testosterone is the “food” which feeds PC, Lupron keeps testosterone levels low. I have two suggestions: 1. Seek a second opinion and 2. Ask for something to assist in minimizing the S/E from Lupron. I have experienced all those S/E.
I would rather be fatigued with minimal muscle mass, etc. than experiencing more metastases along with a lot of pain.
brother “ how to say it “ ,
I dunno if this will come across right but here goes. T_A has just told you the living hell that happens right after the “ high “ of coming off ADT brings. If you’ve decided to plain give up and enter hospice then all speed to you for making the big difficult choice. Takes manly determination to do that.
But ….. maybe there are things - ways you haven’t entertained for your QOL quite yet. Think you are bad off ??? Well it’s all relative. Listening to your circumstances, I’d gladly and happily trade you in a heartbeat. I’ve ballooned to 325 lbs , kinda like Humpty Dumpty with toothpick arms and legs where muscle mass used to be. ADT / tumors have put me in a wheelchair in the 2 1/2 or more past years . I can’t walk 15-20 feet without collapsing and having excruciating pain in my cancer eaten feet and knees. Hot flashes ??? I love those because they warm up the sorta dead leg flesh that heavy neuropathy brings for some long term Xtandi - Lupron- Zometa users. My crazy legs syndrome drives me crazy sometimes ( easily fixed with Xanax ) and how many places around your house and in your cars to you have banks of pee jugs stashed to suit your frequent peeing issues ? I have them beside my bed, beside my couch, 5 in the dining room, several put in the garage …. 3-4 in each vehicle we own. I even have three of those crooked necked pee jugs and a large black privacy poncho stashed on my etrike for when I need to pee emergency like while im out riding that on hike and bike trails or in shopping centers. I find a quiet corner ( inside or outside at a shopping center , for example ) , put on my privacy curtain poncho and attend to business. There is no holding it or waiting until later, when I have to go, I have to go. ( Now and frequently , and since I can’t jump up and run into the bathroom I need them stashed strategically. ) …. exhaustion!!!…. probably most ADT guys have plenty of it, but the bigger you are and the less mobile, the more exhausting things can become.
I could go on and on but you get the drift. Herze the hook : Ive discovered that with a little determination and effort that I can actually create a comfortable and pleasant environment for myself …one that creates a great QOL around me to enjoy my remaining time with. I’ve developed “ workarounds “ and “ adaptations “ for all these issues that ADT - aPCa throws at us . If you are determined to go the hospice - death route then more power to you, I deeply respect your choice. But, if you want to squeeze a little bit more zest and QOL out of life, the means are right at your hands. Talk to your pallitive care team , if you don’t have one yet, lose that bravado and get busy getting one. I can say from personal experience that a few opioids and some benzos ( Xanax ) can up tempo your QOL boat a whole bunch. Not feeling up to par mentally ( and clearly you aren’t ) speak with your pallitive care doctor. There are recently developed new psyc drugs that rock your world in a positive direction. Your palliative team is literally expert with those, they help 1000s every month to a much better place.
There is no reason for you to be in much ( very little ) discomfort / pain. “ that “ can be fixed to a really tolerable level pretty easily. Your pallitive care team is also expert at help that too. Things like home infrared spot treatments, one of those $125 little folding steam cabinets, hydro massage ( at home medical spa or gyms , rehab businesses etc. ) are commonly available. Keep those jugs right beside the bed. After a Xanax and pain med at bedtime, … just roll over and pee in a jug. In short order you get used to it and you don’t even wake up doing it and don’t remember it the next day. Energy ….. well if you are newly comfortable ( opiates are a stimulate too ) and feeling better, energy becomes WAY less of an issue. There are zillions of ways to conserve your energy. I use those 6 wheel office chairs to roll around the house with. I go everywhere in them. The energy they save is substantial and you feel great in the process. Works the same outdoors …. Look at my old posts and replies about my etrike / three wheel scooter. You can take those quite literally everywhere …in CVS drug stores to coastal exotic hike and bike trails.
What I’m saying is that try to look past your frustration and yuck environment and install - put in place, some accommodations / adaptations that alleviate all those physical issues and allow for you to be feeling much better and return to looking out at the world around you positively again. Given a chance , I’d bet you can totally reverse nearly all the things that sour your world and instead improve things so much you’ll wonder why you didn’t do this sooner.
Anyway , there is ever so much more to all this, that just maybe before you commit to the drugged up hospice death bed , that you might give some of this ( mentioned above ) some consideration and save hospice for when you “ really “ need it later on. You got plenty of gas in that tank if you institute some workarounds and adaptations… lots of QOL life you can claim if you are of a mind to.
Note: ALL of this is just IMHO, my own perspective and my own experience. Maybe it isn’t right for you, maybe quitter is more what you want. Ima hanging on having fun until I can’t possibly move forward ( stroke or heart attack etc. ) … or squeeze any more juice out of life brother, how about you ???
Just say’in
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Man, it can get rough.
I went through a stage of needing the toilet ~6+ times a night.
I kept thinking of that Burt Reynold film Semi Tough where he strapped a bottle to his leg.
No kidding lol. I’m experimenting with those self adhesive condom type ( with a bag or bottle on the floor ) to wear while I’m out driving and / or shopping…or at a restaurant. If they work, they will be an upgrade over what I’m doing now. I also have to deal with VERY unpredictable BMs and carry a porta potty ( clean wipes , odor proof container etc ) with me when out in my truck. I have far less trouble with BMs but I do have to worry about both. I could sit and agonize over my body issues or push them to the background by adapting in ways that allow me to bring QOL stuff to the forefront. Eating out, shopping, parks, resorts, etriking … movies. Of course being in a wheelchair adds to the complexity but maybe strap the jugs or bags ( unseen of course ) to that and add it in a positive vibe.
Just say’in
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I used the self adhesive condom catheters before my AUS implant. I found them very trustworthy and was doing 16 hour long haul flights with a 1litre(2 pints) leg bag. Better than filling my shoes every time I stood up. lol
I found the adhesive could get painfully sticky but Smith and Nephew have an adhesive removal wipe that can resolve this. No shortcuts for the BMs unfortunately.
Wow, thanks for the cath info. I’d seen , on the group, that getting them off could be a problem. I’d thought of trying alcohol wipes but I’ll check out those wipes first. I appreciate the great info.
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Mine had Part #403100, "Remove" product name.😀
I got the condom setup today, the 403100 wipes will be in Friday. This is looking very promising and I’m kinda excited to last longer that 20 minutes when out , especially in a restaurant or food store or long trips on my etrike. If it works, it’s a serious upgrade for me. Thanks for the product information m I appreciate it.
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Dear Mr. Kal,
I just found your name in LinkedIn and didn't realize you used be a used car salesman. But in retrospect I can understand that and I can see that you must of sold lots of those Yugos....
Remember back then, how you told those rubes fuck-you? Probably plenty of members in our audience will know how.
Good Luck, Good Health and Good Humor.
j-o-h-n
Really !!! That must have been a long time ago. I can’t imagine what that used to say. I just barely remember something about it , that’s it. I better try to see if I can find it myself and take a look , yikes. lol
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Well I did get the adhesive condom catheters and tried them out . WOW , I was actually shocked that it could “ stay attached “ properly without leaking. Plus I got those adhesive , aloe soothing lol, adhesive remover pads to get it off my body.
For the very first time in nearly 2.5 years I was able to etrike up to a local shopping center, go into a local Starbucks , and take my beverage to the patio and sit and slowly enjoy it. It’s like a new freedom that lifted my spirits dramatically. In total I was out in just under 2 hours and “ went “ 5 times and was STILL able to enjoy my outing . It feels scary until you get used to that they won’t leak, but after a bit of confidence building experience, I settled into them nicely. I got the 750ml size that fit knee - ankle perfectly and while out ” went “ 650ml , nearly filling the bag. Maybe wear two bags next time for extra staying time if going to a casino or restaurant.
I just wanted to thank you for suggesting those , after about everything else failed ‘ . Im a happy camper and have new “ being out “ resources that “ ups “ my game dramatically. The benefit of those, for a guy like me mostly in a wheelchair , is totally wonderful .
Appreciate it brother,
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Kaliber - I feel like I know you well and can't tell you how much I admire your mindset and approach to life as you find it. Thank you for sharing the details you do as I think it helps more men than you know. We all have to deal with doctors, drugs and treatments but you continually make us aware that no matter what, we can always choose to live our lives. QoL is a relative term and you have found a way to maximize it for yourself. I salute you.
Well thank you buddy. I’ve felt pretty screwed here myself but I’ve managed to mostly overcome it. I’d like to think - hope really, that I can prop up at least a few needy brothers just like myself. Share things that have helped me on the long shot I can help perk up someone else too. Its tough for all of us and our families…. I have never found an up side to aPCa.
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I appreciate you taking the time to write such wisdom. I am exhausted, I've always been a fighter, I just don't seem to be able to find the strength to do it this time. I may in the near future be able to say 'I am in'
The better and more upbeat you can make your life seem, the less your exhaustion permeates because you are filling your world with distracting , more interesting, things to do / be.
Try diverting your attention with fun things to do. Even sitting in one place using super fun / pain relieving VR googles or playing attention absorbing UNO or casino quality 3 card poker with your friends - family ….. will take your mind off of stuff like exhaustion. The less of your personal attention/ energy you give it, that time filled with enjoyment and attention absorbing activity instead ( mental activity ) robs it of some of its power in your life. Expand on that and things just plain get better. Just IMHO.
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You do seem bottomed out , we all get there sometimes, …. at the least , talk to your palliative care team and let them know how you are feeling. They have a lot of meds to perk you up and brighten your day. Even if nothing comes of it, you have little to lose and lots to gain. Give them a chance buddy.
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its your life......ultimately ....we all expire.....i right now am having a roigh go of se,...... and lost my best friend of 51 yrs in car wreck....between side effects and survivors guilt.....at the edge of the cliff...but i promised wife id atleast stay the course till it dont work no mo....then its my choice....as it is all of ours....ive been in this club 6 plus years....and this question comes up prob evry 3mos or so...they will try to talk u off the ledge...but in the end.......i think qol trumps others feelings/ wisdom...including t.a.....its like faith in heaven.. NOONE has come back and said right on its as advertised......but people still hang on....but me i do believe as native americans do....that a hawk crossing ur path is a loved one telling u their good.....happened 3 day aftrr me buddy passed...peace to all just me 2 shillings of rant bw
Maybe try an estrogen patch to help with side effects.
I don't see any mention of Estradiol patches to counter the SE of the Lupron.
I agree with everyone else. ADT is a bitch but the alternatives are much worse. I have castrate resistant stage 4 so ADT does not work but I was castrated. I hate the hot flashes and everything else associated with no T. I am starting to get bone pain from growing lesions and it is not fun and it is not even that bad yet. It will get much worse if not treated which I can hardly imagine. Do not do this to yourself you will be miserable. Life is not as it was before and you can not go back. As difficult as it is you need to accept this and do everything you can to make the rest of your life as tolerable as possible. Quitting ADT (if it is working) is not the answer.
I wish I were 30 years old and had a hard 8 inch dick. Not going to happen, I am 70 with a shrunken limp dick, hot flashes urinary urgency frequency and pain but I still have interests and my husband and dogs to help me through all of this.
Why worry about what the doctor will think? If he’s experienced he has seen plenty of patients refuse, decline or stop treatments. His life will go on just fine.
The same can’t be said for yours. As has been mentioned, you don’t know what you’re headed for if you simply stop. Far, far worse than what you’re going through now. The problem with the fantasy of ‘taking control’ of your life by doing this is you may well live far longer than you expect in a state that is basically unbearable.
Drugs can help of course, especially antidepressants. But the ones for pain all eventually stop working-best to save them for hospice if you can. The suggestions for mixing and substituting ADT drugs is a good one, as well as the estradiol if you can get it.
Unless you’ve simply given up, exercise is the best way out of ADT side effects by far. Same for radiation, chemo, all of it. Do you do any currently?
Finally, getting up to pee a lot is the most common problem we have, and as you can see there are many possible solutions for it, more even than in the replies.
Tell the doctor the truth, and you may be surprised by the alternatives he suggests. But don’t just cancel your appointments and run away.
Dear friend, I have already been through four seasons of Lupron and shorter and longer vacations from treatment. My last one was devastating because I hurt my knees and could hardly exercise and gained 20 lbs up to 220 . Finally I made up my mind and forced myself to resistance exercise 2/3 times a week and started feeling better. My last vacation about to finish next month showed very slow recovery of testosterone and never went back to my ususal level, but resistance exercise and calistenics everyday have made a significant difference. Also McGill 3's routine worked wonders for my lower back pain. I pee 3 times at night and the hot flashes still haunt me during vacation although not so badly. Do not give up, look for an alternative that suits you, I cannot advise there because every case is different, maye TA can put in a word there.
The sun rises every morning and renewed Faith and Patience are the gift of God or the Universe or whatever you beleive in.
May the Force be with you 🙂🙃🙂
Would you mind posting mcgill3's routine? Search didn't work. (as usual)
Its a PDF and the system does not allow me to load it, is there any other address I can send it to you? My email is ricardomartin1948@gmail.com, if you connect I can revert with the file. It is really worth while
Ultimately it is your decision what you do with your body. Your doctor should accept that.
You've been on ADT for two years. I've been on it for almost six years. I have the same side effects but I've just accepted them and adjusted my lifestyle to accommodate them.
Millions of people around the world deal with life altering events every year ... paralysis, amputation, sudden death of spouse, etc. Prostate cancer is our life altering event.
Here's my advice: We can't go back to the life we had before cancer just like we can't go back to being a teenager again. It's best not to compare your current life with your previous one. Consider this as your new life and work with what you have. There is still lots in life left to enjoy.
I've have a good life the last few years. The cancer remains suppressed. My PSA is undetectable. My oncologist says I should still have a few more years ahead of me. I hope you don't give up on your life too soon.
You so sound bottomed out, my friend. Not that you don't have plenty beating you down. I think the advice to find distractions and pursue palliative care is spot on. My care team is good, but sometimes I have to really pound on them to understand what I am saying/experiencing. Nodding their heads is not enough, here is my situation and go do something about it! I wish you the best but hope you can find the power to beast on with this.
One thought for everyone. We all take a lot of meds and suffer a wide variety of side effects. My daughter recently had a test to evaluate her pharmaceutical intake - pharmacogenomics - for ADHD and was deemed a 'low metabolizer, or something to that effect. She has been prescribed too much medicine for how her body process them. Meds are often prescribed for everyone the same way and don't take into account our unique genetic make up to intake and process them. Perhaps, just perhaps, you could look into this and doctors could adjust your prescriptions to accommodate and relieve side effects?
You may want to consider doing low-medium dose transdermal estradiol (TDE) "add-back" therapy in addition to your current ADT. Your estradiol has crashed because your testosterone has crashed (estradiol is made from testosterone). Low-dose estradiol patch therapy is commonly used to "add-back" the lost estradiol, and it treats hot flashes and osteoporosis, among other SE's, with a naturally occurring hormone. A single patch of 0.1mgE2/24hr, worn for 1 week, and then replaced with a new patch the following week, etc., will eliminate many of these side effects.
Medium-dose (2 patches at a time) will give more relief, and high-dose (HD) TDE (3-4 patches at a time) will allow you to stop using Lupron ADR because HD estradiol will effectively castrate you and keep your T and PSA levels very low.
HD TDE is not currently SOC, however. You may have to wait until this Fall when the phase-III PATCH trial results are published to get a doctor to prescribe HD TDE.
just like that…..and maybe add a thank you for him doing the best he could for/with you…..but that you’re done….
I am sorry you are suffering these SEs. My husband has started hysical therapy, and that is helping him feel better.
You simply need a vacation from ADT. Restart when you are ready. But why do you have an infusion instead of an injection?
p.s. Try heat for your back. See my bio.
I understand your feelings. I've tried the combination leuprolide + enzalutamide but the side effects were intolerable. I've tried leuprolide alone with bad but bearable side effects. Most recently I took 6 months of abiraterone + prednisone. I still had some side effects but much less and it drove my PSA to undetectable with testosterone at 19. This on 500mg abiraterone with a low fat breakfast. Rather than stopping all treatment, why not try that? I see you took abiraterone previously but were also on leuprolide so of course the side effects were worse.
I've already decided what I'll do when ADT stops working. I am not willing to go on to more toxic meds. I've endured this battle for almost nine years and I've enjoyed my reduced life a lot with family and friends. But nobody gets out of here alive.
All we have are successive moments of now.
Tomorrow exists in expectation, only!
If you feel you would be better off dead, then enough has been said. If you wish for release be ready for the pain you unleash!
May God grant you swift passage and spare you the lashes of a prolonged and painful passage...
Best wishes...
Rod of God.
We all make the decisions that are right for us, and TA has given a very graphic account of what may happen when Lupron is discontinued. I suffer with the same effects, have done for 4 years, but I love the sounds of my motorcycles, the smell of bread, the feel of my dogs in my hands and the time with my wife. I cannot think that what comes after can be any better and I hope to stay with it as long as possible. Take care of yourself and the best of luck with your decision.
Life is strange isn't it. Hailwood, for whom I saw many times was truly the greatest and he got killed in his car returning from the fish and chip shop and it was all due to someone else's mistake. Do the best you can and seize the day for no one knows what tomorrow may bring. My mother always said, " see you on the Christmas tree" meaning she would be there the following year. Positive thought.
Easy Peasy, just say your wife told you to........... Kaput, end of story....
Good Luck, Good Health and Good Humor.
j-o-h-n
Just tell MO, you do have choice. You are the one suffering and potentially dying of pc. I was on Eligard for 5 years along with Zytiga for three years. Was hell for me. I also got osteonecrosis of jaw from Xgeva. More hell.
I'm now on a vacation (5mo) from Eligard . I am feeling better, not perfect. I got new MO.
If and when my PSA starts to rise I have to face going back on Eligard. Then, like you, I'll have to make my choice. Is QOL worth living.
Best luck to us all.
Think about this very carefully. Before starting ADT my Psa was 5664 with Mets on spine, pelvis,both femurs, ribs, lungs and nodes. The pain was horrific. Ya see I’ve had Pca for 22 years before allowing treatment. I went four nites without sleep because of the pain. I could feel every time my heart beat because each time it did sharp pain shot down both legs. I begged God to take me home. I started taking curcumin and Celebrex for pain and got some relief but when my urologist had an mri taken that showed not only the Mets but also two compression fractures I gave the go ahead for a one month Lupron injection. I’ve been on adt for two years now and have very minimal side effects. I’m 74 and feel pretty good as far as fatigue. Very minimal side effects but I take curcumin and magnesium. I don’t know if that will help you but knowing what it is like when this disease progresses I’d sure try it. Whatever your decision best of luck to you and God bless.
SO sorry for your frustration. I feel comforted that others have the same reactions that I am having. The fatigue for me is the worse. I have found some naturopathic help with the hot flashes so they are not as bad as they had been.
I find some comfort in that they have me on a 2-3 year program and all is going as planned thus far.
I often vacillate between the frustration you are showing and the thought that it will get me double the years that I would have without the treatments.
I got multiple ice packs that I use when the hot flashes flare. My wife also got me an ice vest from Amazon for when I have a really bad one, and I strap that on for some instant relief. I also keep a table fan right next to my recliner and flip it on as needed, and I keep a rechargeable fan in my EDC bag for when I am out and about and one strikes.
Getting a handle on the mental "panic" and reaction to all of this is the hardest part. I am trying to work in regular meditation, tai chi and other mindfulness exercises. I even tried psilocybin mushroom micro-dosing to manage the depression, and it seems to have taken that edge off.
It can be overwhelming, as you are experiencing, but it can also be manageable if you try to focus on that side of your mental state.
Best of luck regardless of what direction you take. You are not alone and have helped me with your honest sharing of your expeirences.
I took a vacation from ADT after two years of not very nice side effects. My Urologist was understanding and we constantly monitored what was going on, that went on for seven years with no intervention of drugs. Yep it returned so I was back on ADT which only lasted a year and a half before I became Castrate resistant. Now on Enzalutamide; PSA went from 82 to 10.6 in eight weeks and still heading down. Had orchiectomy which all my doctors thought a good idea, ( my decision) and halved Enzalutamide dosage now. At this time I have also begun Estradiol patches and feeling real again. The doctors are monitoring me constantly and at the end of this month I hope to be taking just forty milligrams of Enzalutamide. I began at 160 milligrams, now on 80 for the past ten weeks. I ride a bicycle and do a low weight routine for thirty minutes. I ride six miles in twenty minutes. From the beginning of my diagnosis ten and a half years ago I have never stopped work and I do a physical job. Gotta push against what nature intends for me. I have many years ahead and plan to see my grandson graduate; he is eighteen months old now and I am seventy two. I didn't come this far to sit on my arse. Still working by the way. I wrote this for you to show you that there is always hope. Hope is something you create and remember to larf and joke and smell the roses on route, just like John and many others that are on the same merry go round. If you wish you may contact me. I don't want to put you down just trying to assist. See you on the Christmas tree 🌲 my Mother always said.
Say Hey! Blueribbon63... none of my business, but I don't see any replies to your answers here from you? Wondering why not! Let me know, if you kindly would. Thx in advance.
We all know that there is a magic bullet. So I have to admit that in a botched suicide attempt I shot my twin brother.
Good Luck, Good Health and Good Humor.
j-o-h-n
Well, hello everyone. I am very surprised, overwhelmed is more accurate, for the response to my post. I am not in anyway posting to attract responses or likes or anything like that. I appreciate everyone's input, positive or negative, no judgement. I do have a couple of things to add to my post that may help somehow 'understand' me better! I am 60 years old. I contracted a chronic disease when I was 28. I have been intoxicated with prescription drugs since then, SEs also. I have fought the fight from the beginning, I didn't let the stigma put me down and never ever crossed my mind to stop of let go of my treatments to which now I have very few options as I have become resistant to most of them. I have always done it alone, I never married, I do not have heirs of me. I am working full time, I commute to and from my office daily one and a half hours. Up until I started or should I say added this new fight with PC I actually looked forward going home to change clothes and be out and about working out at the gym. For the last 6 years of my life I was a long distance runner. I was always in good shape, never showed my true age. I enjoyed life, no regrets.
But life just won't give me a break, I get this diagnosis and again my world tumbled down. This is too much, I exude of chemicals. I don't consider myself a looser, on the contrary I am a winner. I've conquered my lifetime goals. I don't have new goals, well maybe a couple; to cash out early retirement and go back to my family in my country. They still love me even though I've abandoned them for so long. My Mom is living her best years, just don't know how many more. I want to go and somehow recuperate or enjoy whatever live is left for the two of us. Will I be able to do it? I try to keep strong to make it but every day is harder. So, thank you for the support or not. Some of the 'jokes' are just in bad taste. Some replies make feel like a little boy that is told not to do something just to have me want to do it more. I appreciate the empathetic responses and the not so much. I am for QOL.
Ultimately, you’ll make the best choice for you. But look at this great outpouring of camaraderie you stoked , all brothers and sisters feeling in their hearts for you. Clumsy, bumbling… great… whatever …its the compassion pouring out to you . You hit the jackpot , so to speak. All of us would give you a great big warm fuzzy hug if the opportunity presented itself. You got a whopping lot of perspectives , lotsa stuff to keep on the back burner too.
For sure, you know where you can come and get the loving attention of guys just like you. Wishing you the best as you move forward brother …. Don’t be a stranger, let us know how you are doing.
❤️❤️❤️
I love the way you are helping me to see all of this from a different perspective. I am not going to disappear, I read posts on this site every day. Thank you for the encouraging words.
😁❤️❤️❤️
Tell them straightforwardly but also be prepared to take the advice to stay the course.
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