Advanced Prostate Cancer Vlog - Comments on Average Life Expectancy and Diary Moan
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- čas přidán 3. 02. 2024
- I had a few comments after the average life expectancy thoughts in my last video and they are all relevant, please read them. Also a private dear diary moan
Hi Alan , my choice is simple my wife and grandchildren keep me going .
Ya the term chemical castration is very harsh .
Losing your manhood is awful but life is very satisfying.
I'm almost 1 year into my stage 4 cancer metastatic prostate to bones and liver .
I'm very pleased right now with my Oncologist and urologist I'm strictly on hormone therapy
Zolodex, Nubeqa , zometa .
I did my 6 rounds of Chemo.
For now I'm doing well the roller coaster ride sucks at times but grateful to have life and joy .
I keep myself busy , chores , hobbies , music etc...
I'm lucky to have 2 close friends to talk to and my wife and family are very supportive.
You guys give me hope as you are 5 years in .
I can only hope and pray to get 5 years
The hour glass is running !
Enjoy everyday 🙂
@carmenvilleneuve5482 Hi, you said exactly what I think, wath I live...Thanks
Keep sharing whatever you can't share elsewhere -- you've got a caring ear at this end from all of us. My husband's PSA went up for the first time in December, and we understand listening to others who are "planning ahead for life events" while we wonder about whether we'll have another Christmas together. He told me recently that he wants to get to the Philly Zoo to see a real rhinoceros this spring. It's on his "bucket list," and he doesn't know where he might be later in the year health-wise. Stay strong and keep fighting -- we're all in your corner!
Thank you Laurel. I hope you do both get to see the rhinoceros. As you say, Its not easy listening to people talking about holidays in years to come when we hope to make it to Christmas. One thing on my List. (before I was diagnosed) was to revisit 'Kitchen Kettle Village' in PA. Which I did!
Regards
Alan
I too feel very alone with this disease. As for hormone therapy and those who talk about "rather dying than living as a half man", I can tell them from my own experience that's total rubbish. You may have to make more effort to keep yourself fit and that means daily substantial brisk walks, a healthy diet and weight training. No need for a gym - just buy some weights and a bike! I was really worried about side effects before I started ADT, but I've not been as strong and fit as I am now for years, and have had no side effects whatsoever - even "downstairs". There have also been studies on the survival and relapse rate of those who follow an exercise programme compared to those who don't with remarkable results, so even if you're not on ADT, there are clear benefits. Quite a few YT videos on this topic are well worth checking out. Thanks for your blogs Alan, from your and my experience, I would guess there are many men in the same situation support-wise.
Thank you!. I completely agree with exercise, it has so many benefits that it should really be prescribed!.
As for 'downstairs'. having had a prostatectomy, when two out of artery's are removed, on the anti hormone and having a dicky ticker, pushing my wife against the wall in a fit of passion just isn't gonna happen.
There are viable options.
I feel quite lonely too. Noone to talk in detail about illness and pain.
I know, its so incredibly hard sometimes.
Alan
Thank you Alan no it's not a easy decision it's very difficult decision Thank you for your response and God bless you
Alan! This is an amazing and touching video. I, too, am at my wits end with Prostate Cancer -- two years now. Man or Eunuch? I don't see it that way. Every breath of life is without gender. Based on your related experience, I think I'm going to be taking a spin around my old haunts in Santa Cruz, CA. Haven't been there in years since my college days and it might be enlightening. Thanks Alan your presence is valued.
Hi Charlie, have fun and please send me a photo of Santa Cruz, CA when you do get there.
Regards
Alan
Hi Alan
I have advanced prostrate cancer had radiation and hormone therapy (no chemotherapy as poor immune system) - being ongoing for over four years with it and it is still well controlled,
However few months ago bladder cancer found in the LHS kidney duct had it removed, now it’s come back with a vengeance and well spread.
My point is you are doing well dealing with your prostate cancer and I am sure from your comments well adjusted in living with it.
Timelines are somewhat of a distraction as everyone is different in health, meds, life style so do not get fixated on them.
I was told I had three years to live and four years on still living well with the prostrate cancer under good control. (PSA 0.5)
Stress can have a massive detrimental affect in your body, one thing I was told early on, control your stress and live longer. It was difficult but I believe it did help.
Well one thing I do know
Prostrate cancer is not going to kill me.
Take care and as Mr Spock said
Live long and prosper 🖖🏻
PS: Prostrate Cancer U.K. are absolutely fantastic and a good listening ear and have local support contact groups
Thank you. I was told by a well renowned cancer specialist that I may not last until Christmas. now I am still here 5 years later and a couple of people I know have passed away and they 'seemed' perfectly healthy long after I was diagnosed. i didn't expect that to happen. its good to hear the strength in your voice,
Regards
Alan
Hi Allan
Yeh Prostate Cancer can be a lonely journey. I belong to a prostate cancer group that I find very encouraging. We share our journey and support one another. Keep posting your videos mate, keep sharing your story. We are listening to you and understand your feelings. We love you. God bless. Ian
Thank you Ian
Thank you for sharing your honest thoughts and feelings with strangers.
My husband was only diagnosed at the end of September 2023, by which time it had metastasised.
He’s doing as well as can be expected and really needs someone to talk to, other than me.
I don’t have any problem with listening to the darkest thoughts he has but he doesn’t want to burden me.
But it wouldn’t be a burden because it would help his health, both mental and physical… and that’s what I’m here for… to heal the love of my life.
I don’t want to push this on him but if I wait for him to connect with someone else who’s currently going through this, he’ll never do it.
Any suggestions on how to entice him to let people know he’s scared and in need of all the love and support that he can get?
Much gratitude and many thanks to you, Alan, and anyone who can pass on any advice for how to further help my sweetheart 🙏🏼❤️
God bless you, friend.🙏
Love your videos Alan!!! They provide emotional support as I navigate the twists and turns of this disease. Please keep them coming.
If you’re ever in Felixstowe, happy to catch up and share our journey. Completely understand, Stay positive 👍
Alan I'm not sure how I came across yr channel but love yr videos...Yr attitude is spot on and mixed with yr easy going manner makes for a really enjoyable watch 👍 I have a small YT Channel myself and I love the interaction I get with my Subscribers 😊
Thank you, yes its this interaction that means so much. Regards, Alan
We are listening to you Alan it’s lovely to hear from you.xx
I know exactly how you feel about going to your home place after many years. Memories come flooding back and one yearns to feel part of the place but one no longer is really. And no one to tell about the feelings of nostalgia and passage of time. But you’ve told us here, and I feel the same way and fortunately you have a wonderful life with a family and grandchildren 200 miles away from your younger life. Sadness of the lost old, yes…but happiness in the new!!! Great video.
Hi Rick, actually my daughter and grandchildren are also about 200 miles away and we don't get to see them as often as I would like. It may sound morbid, but we moved to Suffolk as this house has a good bedroom for when the end arrives. I just didn't expect to still e active 5 years later!!
Regards
Alan
@@alanbowles2917 great to be alive and kicking beyond our expectations!! You have a very helpful story and a fine way of telling it that makes for strong videos. Thank you 🙏
The people that say they would rather die a man are not real men. Real men fight to stay alive.
I had a prostectomy and they could not save the nerves cause of the cancer. Then a year ago I had a reoccurrence, radiotherapy and hormone therapy.
All the side effects I am open with and make the jokes myself.
Been following your blog for a while and I am glad it helps you as much as it helps us. Give Rupert a scratch behind the ear from me
Hi Mark, Rupert told me to say thank you for the scratch!
I agree, and also I think its ok to have an occasional wet eye.
Regards
Alan
Thanks for sharing, I’ve been following you for some time..I’m almost 5 years post op and my PSA has been undetectable..56yrs old and pushing forward..I’m aware of all the different therapies, that may be in my future if I relapse..so I appreciate you sharing your experiences …stay strong..
I can’t explain how I can feel so connected with you. It’s the way you share. You are helping people with your thoughtful experiences and I really hope you feel you have friends with this group. Just my second of your vlogs and I plan to cut back to watch more. Late stage prostate cancer has made it hard for my dad to share even though we are listening. It helps to hear your thoughts.
Thank you very much Diane. Hearing from people on my Vlog helps me immensely and lifts my heart. I do feel less alone. Regards, Alan
Hi Alan thanks for another interesting blog. I enjoy and look forward to following your thoughts.
Thanks Mike
Thanks for sharing your thoughts. I have the utmost respect and admiration for who you are, what you’re going through and what you are doing. I’m just recently diagnosed (PSA of 81)and struggling with all these decisions, trying to find a doctor that will treat me with the treatment that I prefer. As you say it’s not easy and it certainly makes you treasure the little things and try to make each day better not only for yourself but others as well.
Thanks Curtis, Keep fighting and you will find a Doctor who can give you the treatment you prefer. Regards, Alan
Thank you for sharing. Stay strong and continue forward!
Thanks Rick
Alan, thanks for the video . I am on the ADT and I can see why some don’t do it but for me the decision is simple. I am going to do everything in my power to try and beat this and ADT is a key part of my treatment. Keep the videos coming!
Thanks Derek
Good on you Alan, It's good to share your feelings and in my case, it's no big thing having the hormone treatment. I know where my priorities are.
Thank you
Hi Alan, if your listeners are like me and I assume most are, we stuck around for the dear diary part. The entire video is touching, entertaining and therapeutic in a way, particularly the dear diary part. There are so many similarities we share and hearing it helps us feel less alone as well. Thanks so much.
Thank you!
I’m with you Alan. Totally get it. Keep talking to that camera, it helps so many.
Thank you Phil
Thank you for talking with us.
Thank you
god bless you, I've been diagnosed with stage 5 prostate cancer, gleason score of 9, waiting on PSMA Pet Scan , A lot to take in for sure, continue to stay strong!
And you, please stay strong yourself. As you say, a lot to take in.
Regards
Alan
I respect your vlog because I'm having a hard time with making the decision of living with it or surgery then radiation afterwards thank you
It’s such a difficult decision to make. People who haven’t been there can’t really be expected to understand, which makes the decision a deeply personal and lonely one. It’s good if you have an understanding partner.
Regards
Alan
Hi Alan. Thank you again for your video. I was diagnosed in December 2019 with stage 4 metastatic with a PSA of 3465, even the DR said wow. I've done the chemo, prostap and now looks like I'm coming to the end of the enzalutamide as my PSA which I got down to 22 is starting to rise again but like you say there are new drugs and combinations to try. MY wife is very similar, not that she refuses to accept but as we are both paramedics of 20 yrs (obviously iv had to retire at 52) she wants to be positive when I just want someone to cry with. I know this may seem a throw away comment but if you would ever want to talk to someone in your position whether to laugh, cry, talk about new advancements or just talk please contact me. It would be an absolute pleasure to be able to someone that relates to what I'm going to as I spend a lot of time when my wife and son are out at work I spend many hours looking out of the window just thinking. Keep fighting my friend
Tom McDonald has a few songs I relate to at 61 years old .
I'm almost 1 year in of my Metastatic prostate cancer the hormone treatment is working .
Yes it's a Rollercoaster ride but it does come up again and smooths out at times .
You give me hope your 5 years in you should celebrate every day 🙂
Listen to Tom McDonald song Cancer , Ghost , Fighter , Stronger version .
Good luck stay positive
That's a very kind offer, thank you. I will think about it. Thanks, Alan
Well said Alan, I'm in a support group and one guy called adt advance devil's treatment which I laughed out loud because I thought how true but its important to have that release within a support not always easy to off load at home, to have treatment and its devastating effects or not is obviously an individual choice but i'd rather be here longer hopefully with medical intervention than to let it run its course without, keep strong and as the comments say we're all here for each other on this pc journey
I agree Carl, as you know. ADT was quite right!
We are all on the same journey together. Alan
When i look at all the wonderful people, famous musicians actors thats gone i realise no one is special
Just be ready and thank God for the many blessings of happier times
Thanks Jackie
Regards
Alan
Hi again, I don't speak well english, sorry. Very touching video, and I understand very well your sensations about the "dead past", and some time in a "position of a man with cancer", I have exatly the same feeling... But of course , even the healthy peoples have the same sensations, but maybe not so "hard to live" as they don't now whath cancer gave us as an additionally fragility. But specially in our case, we have to enjoy our present. Your "present wife" is there, in front of you, and your past stories where good and happy stories, just be happy to have been lucky enough to lived them. By the way ... music of the 70" still stay enjoyable today, and far more great music that a big part of what we have to support today. As you, I cannot driving without listening Jethro-tull (I am at this moment listening "Living in the past album 🙂) and all those greats band of this era. Keep on Alan, but enjoy your "living" present !
I ve just been diagnosed this last monday with a stage T2c N+... I m 54 , i' m french , my english is not very good but I follow and admire you .
Thanks very kind Joseph, thank you. I hope treatment cures the cancer for you and enables you to live long and have a good life.
Regards
Alan
I'm in year 26 with prostate cancer. Did radical prostatectomy 26 years ago. Biggest mistake. Wife started affairs and divorce and turned both daughters against me. Refused chemo after seeing how it devastates people. Its a very bad journey.
I know exactly how you feel Alan. Been fighting for 16 years.last 4 with stage four. I feel when I die it will be from the side effects from all the different treatments I got. It’s a double edged sword.I would be alive today if I didn’t get them. I live every day like it might be my last.people plan ahead I don’t.. I had my Christmas tree up for two a half months. I wanted to really enjoy Christmas, might be my last. I enjoy the small things in life now, things I took for granted. Enjoy my time with my children and grandchildren.. don’t waste a minute. I’ll say a prayer for you please do the same for me. Rich
Cheers to you from New Zealand..
Chin up brother..
Hi Allan thank you for sharing and have been wondering how you've been doing. You can chat with us anytime it helps with my journey. The gerbils made me laugh. Take care
Thanks Dave, to this day I still don't understand why they were happy to have Gerbils eating the food of our plates.
Regards
Alan
What treatments are you guys taking ? And how long have they worked and are they still working ?
I did my 6 rounds of chemo , Nubeqa , Zoladex, Zometa .
Medications of different brands are pretty much the standard for treating
Metastatic prostate cancer .
Nubeqa only became approved in Canada in November 2022 i think its made in the UK .
All the best everyone
Hi Alan, I am curious to know how many peoples among those who said "I prefer a short life without treatment" are in our situation : facing cancer and getting a pronostic of two years life !!! Easy to choose when healthy... Then, you don't have to be "ashamed" about your choice.... The best for you, and greating from Belgium.
Apologies,
I had thought I had replied.
Thank you for your message. I have known, and known of, a few people who made the choice to let nature take its course. Sadly, I don’t think they enjoyed life much and are no longer with us.
Regards
Alan
Where in Belgium 🇧🇪 are you?
Regards
Alan
I'm having a very hard time with losing my man hood I don't know what to do about making the decision everyone says have the surgery but it's not that easy
Hi Lance,
Only you can decide.
It’s certainly not that easy, in fact extremely hard. I chose life and feel a bit less than a man, but I am still here watching my family enjoy life.
I guess it’s how you value the options.
I am not qualified to give advice.
However, I choose a longer life and don’t regret the decision.
But please think long and hard about the choice ahead.
Regards
Alan
The 😢🤗🤗🤗🤗🤗😊😊