Today is a day of lasts. Today marks my final visit to the Mayo Clinic. It marks my last blood draw. It marks my last needle stick and IV catheter placement. It has been 4 years since I’ve been coming here at least every 3 months for some sort of test or treatment. I look down at the veins in my arms and remember how heathy and prominent they were at the beginning of this journey. Now they are faded, small and hidden but they did their job and lasted until I needed them. Keeping me away from needing a more invasive central line port.
Today’s visit was to get a blood transfusion as my cancer has invaded a lot of my bone marrow destroying the stem cells there making me pancytopenic (this was made worse by Lu 177 but since not recovering it is due to progression of disease). I agreed to get the transfusion after my last consult with my oncologist yesterday. He thought a “top off” would help with the fatigue and shortness for the next 6 weeks.
Now the final leg of my journey has arrived. I will enter home hospice on Monday. A decision that was not made lightly but a decision that I know in my heart was the right one to make at this time. The cancer is now completely taking over and it is time to focus on dying with dignity.
I feel at peace with this decision. It feels strangely comforting to be finally drifting downstream with the river of life instead of constantly swimming upstream against the current.
I would like to share some final wisdom if you would allow me?
1. If you are the start of your journey hit that cancer hard. Do whatever treatments are available to you which have a scientifically proven difference increasing your overall length of survival. In the beginning the negative affects will likely be due to the side effects of your treatments and not from the cancer itself - trust me...the way you will feel in your last 3-6 months of your disease fight is so much worse so try to keep your disease burden low. Exercise and stay fit. This will help you immensely. Push through the side effect of ADT/chemo fatigue. It’s hard but extremely beneficial.
2. Your prostate cancer is as unique as you are. Yes all of us on this forum have prostate cancer (or are supporting someone with prostate cancer) but we all likely have very different DNA damage and errors that have caused our cells to divide uncontrollably, turn off apoptosis and lose the ability to stop dividing when in crowded contact with other cells. What works for someone may not work for you. Your cancer may be able to be suppressed with ADT for 20 years or maybe just 6 months. Genetic testing will help to identify known mutations that may help with possible therapy but this is just the tip of the iceberg.
3. Don’t put too much faith in supplements and diet. Eat clean and focus on plants but the thousands of claims about this supplement or that herb should be complementary to what you and your medical oncologist have agreed increases overall survival. As per #2 the guy who claims that this supplement or herb is what has kept his prostate cancer at bay for 20 years may just have a milder variant of prostate cancer with less aggressiveness. Yes I too as a physician watched the series The Truth About Cancer 4 years ago and took notes and basically did everything they claimed would work. Here I am dying 4 years later and I spent a lot of money on these therapies both here in the USA and Mexico. I think naturopathic treatments helped me feel better during chemotherapy but this is just an assumption. I really don’t know. Be wary of claims of this or that curing stage 4 prostate cancer. Do complete cures happen? Maybe or maybe they are in remission? You will always find that person who drank baking soda, took dog wormer or whatever and is now “cured”. It is not the norm for most of us.
4. Use this forum to bond with your brothers and find out what others are doing. Over the last 8 months I received a lot of medical advice which was completely wrong and inappropriate. It is ok to get the advice but you really should run it by your medical oncologist vs listening to lay people who have your best interests in mind but lack the proper training, skills and art of interpreting medical literature. This takes years and years to get proficient at. Just because someone is learned and well read and versed in the literature regarding prostate cancer does not make them an expert. That is why there will never be online medical schools producing physicians. You needs to see thousands of patients in real life scenarios before you get to become an expert.
5. If you have advanced prostate cancer you should have a medical and radiology oncologist as part of your team. A urologist does not have the training to manage APC on his or her own. Get a referral!
6. If you don’t want to do any medical or surgical treatments then that is your choice. Also when you feel it is time to stop fighting that is ok too.
7. Don’t take your disease out on your loved ones. My wife tells me countless stories from her support groups of how we men start being mean and unaffectionate to those that care for us the most. Yes it sucks. You have cancer. You may not feel like a man anymore because you have have no testosterone, zero libido, or impotence but your wife or partner has nothing to do with that and they just want to help.
8. Not all doctors are created/trained equal. If you don’t gel with your provider or even if you want a second opinion that is ok and is smart. Be your own advocate but respect your doctors’ knowledge in their craft. I have practiced in 4 countries across the globe. The USA is the only country where patients frequently and truly believe they know more than their physicians because of the internet.
9. Again early in your disease do what you’ve always wanted to do but never got around to it. You have no idea how things will progress so don’t put off your bucket list any further. If your disease burden becomes too high or the pain is too severe you won’t be able to do anything.
10. Take a break from prostate cancer. Prostate cancer is part of your life but is not your life. Unplug from the internet. Stop researching from time to time and just enjoy your life.
Peace and love to you all.
Written by
Cleodman
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Thank you for your post. You have a lot of wise advice to offer. I have followed your posts during the last two years that I have been here as you often have interesting things to say. I hope that this next phase of your journey is peaceful and without pain and that you get to spend some quality time with the people who are closest to you.
Jesus Doc. I don't know what to say other than I will save your 10 points and refer to them during my own journey with this brutal disease. You have been incredibly generous in sharing your story and I know we all appreciate it on this forum.
We have never met but I have shed more than a few tears reading your posts.
I’m so so sorry to hear this. My heart breaks for you and your family!! This posts brought tears to my eyes. It’s so hard to hear. I know in my heart I will be in your wife’s shoes someday and that is so heart wrenching. May God bless you and your family. Sending prayers your way!!! 🙏🏻🙏🏻🙏🏻
Lots of love to you brother. Thank you for sharing the wisdom gained through your courage and experience, and the gift of your affirming and encouraging words.
What a hard post this must have been for you to write. I want you to know how much I appreciate this and have saved it. I've been following your brave journey with so much hope for you and your wife. You and your family will be in my prayers for strength and comfort.
CM: that was a great, well-thought out post, thank you for chronicling your path recently. Seeing you and friends I’ve lost to cancer reach this point is heartbreaking. I will never understand why it even exists in the evolutionary sense. I wish you peaceful thoughts and love with your family in the coming days. — Tim
Not to be crass its not the years we spend its what we do in the time your given....you seemed to have not wasted a moment....and the insight you give us to face an uncertain future..is another show of ageless wisdom....my peace come in time to those you leave behind....
Hey Cleo - thank you for your honesty and advice. I appreciate you on this forum I take your words to heart. Your clarity of thought I hope will bring you a peaceful transition.
So many thoughts racing through my mind, not sure what to say except thank you for taking the time to write and share your thoughts and advice with us. You are obviously a caring and thoughtful physician. I'll lookup your 10 points some have mentioned here and keep them with me. You are very courageous Doc, in my thoughts and prayers.
Well .. you seem clear and lucid ... you’ve thought it out with dignity and class. Pretty impressive. Warrior King. Your 10 points are great, I saved a copy. When I was in the same place where you are right now, I didn’t handle it very well I’m afraid...my wife either. I wasn’t prepared, it wasn’t anything I wanted... it was just suddenly thrust on me. Weirdly, I’ll have to do this twice.... 2nd time I’ll have had more time to digest everything and be able try to have a little more dignity and class ...like you have ...I hope. This is awkward to express but I’m just trying to say thanks for sharing this intimate moment with your brothers ...and setting such a classy example for the rest of us and this glimpse into your life. I know , pretty much, what you are experiencing and feeling right now ... saying “ sorry “ just doesn’t seem quite like the right thing to say ... I’m just going to thanks instead big guy.
So keep us updated , I’d like to see you beat the three years home hospice my buddy Bussman had. I’ve said this often but humans are very resilient and can last longer than you’d expect ... bussman the poster child for that observation.
Thank you, nicely said and very appreciated. Your last post hit me hard and not knowing you personally didn't make it less so. I started typing 3 or 4 times and scrubbed it each time. I did not know what to say. Your a wise man and your perspective is gold. I hope not to need it soon but I will always remember it and you, especially when I am where you are now. I feel your at peace now and I am glad if you are. Please keep writing as long as you are able. Again thank you.
Thank you CM for sharing your insights at this most difficult of times. You’ve been such an inspiration to all of us here. Please continue to post when and if you are up to it. God bless you and your wife. Praying for a peaceful transition to an even more beautiful life.
Amazing grace you have to take the time during this difficult moment in your own life, to try and help others. There’s a special place in heaven for men like you. There just has to be...
I have nothing but utmost respect for you. You fought like a lion untill it made sense. Than you were wise and strong enough to make the decison to stop the treatment. Throughout this you shared with us knowledge and compassion and even at this stage of your life you take the time to guide us. I can sense from your writting you truly are at peace. And righly so. You did all you could, you lived, made memories and this will all help your wife as well. I wish you nothing but the best on this part of your journey. Peace and love to you and your loved ones.
Top man, top advice. Massive thanks and respect for taking the time to give us your powerful words of wisdom, and incredible perspective. They are pure gold and I hope they will be shared with, referred to by, and a comfort and guiding light for many people dealing with the Big C.
#10 is a favourite; a brilliant, positive way to wrap up your list. It’s a beautiful sunny day here across the pond, and I’ll shortly be making the trip into London for the extra PSA test requested by the clinical trial that I’m a tiny part of. But now, thanks to your post, I simply won’t worry about it. As soon as the plaster is on, I’ll be out of the hospital to Unplug, Enjoy Life, and take advantage of lockdown-permitted ways to soak up the city, and make the very best of the day.
Peace and love to you and your wife too, brother. As soon as our pubs are allowed to reopen, I’ll be raising a glass to you both. All the very best, and take good care.
I don't know what to say, other than I'm in tears. It seems like you are at peace, but as a total stranger who is also 47 I feel that it simply isn't fair. I know that makes me sound like a petulant child, but that is how I feel.
In spite of your situation, you craft the most gracious and informative post. I hope I have the same grace and dignity in my time. I'm caring for my father who has APCa, and I imagine that with the urological problems that I have had in my 40s, that it most likely is my destiny too. I'm here for information for my father foremost, but to cultivate knowledge for myself as well. Thank you for imparting your wisdom, I greatly appreciate it.
You and your family are frequently in my thoughts and prayers and you will continue to be.
I don't know you, but I love you, and I'm sorry this is happening.
I too have tears in my eyes as I read your post. There is nothing I can add to all the other replies, apart from God Bless You and your wife. I wish you peace and love , stay strong
Kim
💔
Cleodman,
Thank you for your parting words.
I am bookmarking this post so I can refer to it when needed.
With your permission, I am going to etch cleodman along with my name when I reach the peaks of the upcoming mountain hikes I have planned and those unplanned but will be once the travel restrictions are lifted.
Dear Dr. Cleodman,Thank you for sharing your journey and advice for us all that is spot on! I hope your ride down the river is smooth and shared with your loving wife, family and friends. I pray you have more time to get through the spring, sumer and beyond, taking one day at a time. Perhaps go to that concert, do some traveling, get out and smell the roses. It would have been a privilege and a honor to be your patient. When we both get to the other side if you're still seeing patients I'd like to see you. Take good care,
Great post Brother. Thank you for your insight.May your remaining days in hospice be full of family and love 💙
May your passing be peaceful 🙏
Big Hug from CA
Randy
Cleodman, not to minimize such a great post, but when you get to where you are going we expect a full detailed report! Somehow I think you will find a way. It was always really nice of you to tell us all whats going on in your life.
Thank you for your heartwarming and poignant post. The grace with which you fought this disease and came to your decisions is something for everyone to emulate. May your days be filled with family love and may G-d grant you peace.
This post is very meaningful to all of us. Thank you.Do you feel that the end has to be defined by metastatic bone pain?
What is your "pain reduction" plan?
I happened to start with excruciating metastatic bone pain in 2018 before DX. After SOC therapy my super high PSA and pain calmed down along with lowered PSA by 2019.
I believe that my end will be reliving that pain once again.
You are a true embodiment of wisdom, courage and benevolence! I have so much respect for your great advice and your unique post will for ever be remembered by many who participate in this forum. The way you have composed your mind to face the reality of the hardest part of your tough journey is beyond imagination but you become a hero undefeated in your dignity. I pray for you and for your family 🙏.
Your story is really awesome. I personally wonder at your maturity in telling your experience. Thank you for sharing your wisdom. I humbly pray to Almighty for your betterment. With very best wishes and prayers.
Thank you for your courage, love and wisdom. That even on your last days, you still gave us some excellent and thoughtful advice. You are definitely a warrior through and through. A warrior we will never forget!
I pray and wish you peace, strength, comfort and never ending love from the people who matters most in the days to come. And when its also my husband’s time to go, I hope you get to hang out with him in heaven coz Im sure you will have a great time together coz he is also a nice, kind and loving person like you are ❤️
You have said so much and exhibit such wisdom at a young age. This is not a time for telling you how sorry I am or about cheers for new treatments. This is a time to continue to be in the moment, as terrible as it may be sometimes.
I think you are an old soul and show such an understanding of living life and accepting our mortality. Buddhist monks spend their whole lives focused on enlightenment and on preparing for death.
This disease hits so many nerves for what our society has decided it means to be a man, without considering what it is to be a human being. This disease teaches us our value beyond our libido, physical strength and stamina. We can choose to face ourselves and our life, as it is, or fight so hard that we miss the life we have left.
As you say, it is good to try treatments that offer real promise but it is important to know when to get off the train. Those who love us don't want to see us leave but we must be strong enough to know that prolonging their suffering, as well as ours, helps no one.
I do so wish your story was a different one but I believe we carry these lessons that we are learning with us after we leave this plane. Maybe, how to let go, how to allow others to help us, without feeling guilt for it and how to feel a deep love for all life in this world. As I am slowly approaching that time, I am gaining a deeper understanding of what is truly valuable and what is trash with glitter on it. It is a shame that it took this to open my eyes and my heart.
I wish you a smooth journey, surrounded by those you want to hold close and one with calm that is based on faith in the joy and peace to follow.
I was really moved by your post...you seem so brave and at peace with your situation. I'm sure at some stage I will have to see my partner come to the end of his journey, and I hope he will be able to be as philosophical.
God bless you Doc. My husband's 9 year journey came to a painless and peaceful end last week. He made the decision to stop all treatments and die with dignity in hospice. He had nothing but love for his medical teams as they tried to help him beat this disease. He did not post here often but appreciated the support and kindness of his fellow warriors. Hospice allowed me to care for him as I have for 49 years and to hold his hand and brush his brow as he peacefully passed away. God bless you all. Mathes72
So sorry for your loss. It is a different thing when we have been with someone for so long and make this final journey together. You are our angels. We could not get through it all without you.
I hope you are able you go forward with a new life. Not to forget him but to honor him and yourself by being happy!
I salute you sir!Thank you for your words of wisdom and for showing us how to accept the end of our journey with courage and dignity. I don't normally invoke the 'God' word, but I feel compelled to do so on this occasion.
An old warriors code (Samurai) goes something like this:
Once we meet and talk... We are Brothers!
It is hard to watch a warrior lay down his sword, but any true warrior who witnesses this, also recognizes this as not defeat, but acceptance and peace within the warriors soul. A storm that has calmed it's rage, and settled itself, but is still the storm.
May peace be with you and love comfort your journey that remains! Thank you for the glimpses into your life and valiant journey. Thank you for sharing and allowing us to walk along your path, if even just for a few steps!
You are a wise and noble man and physician indeed Cleodman. At the end of a long journey you think not of yourself but what wisdom you have learned and gift that to those of us here. Compassion is the highest form of love, or very close to it anyway. Thank you for your example: Dignified in life and dignified in dying. Bless you.
You are a beautiful person! I too am moved to tears to write but your message needs to be acknowledged. I too am a physician but some 40+ years older than you are. So many need to heed your words. Your wisdom belies your age.
Luckily I live in a state with death with dignity legislation but in any event hospice should make your final journey easier.
You have have given us and many more to come later, a gift of true wisdom!! Thank you for sharing, caring and teaching us by your example. Praying for you to find God's strength, peace and for your family to be comforted in these last remaining days.
Cleodman, as a doctor you have clearly dedicated your life to helping others. I don’t know you personally, but through your postings it seems you are a kind and compassionate soul. You clearly continue to help others through the wisdom in your words even at your greatest hour of need. I pray that as you transition from physical body to spiritual body you do it in a peaceful comfortable way. 💞🙏🏻
What a brilliant man you are. I have been doing volunteer hospice work for years and you have the perfect attitude. When death is near, it is so helpful for you and your loved ones to embrace it. Don’t be afraid...the best is yet to come. Please have your wife post to let us know when you have passed. We will say prayers and your Soul will be more quickly elevated! May The Good Lord bless you and your loved ones.
First, thank you for caring so much for others as to write so clearly and concisely your 10 points of advice; the result of your own experience— as doctor, patient and as a brother to us all on this journey.
More importantly, sounds like you are about to write/ live the last chapter in your Book of Life.
Make it a good one. And stay in touch if you can.
You have made a lasting impression in the very best of ways, Thank you.
Thanks for the 10 points. More or less we know these points very well but I guess we could not articulate it as well as you did or we were in denial. I sincerely hope you kick the tin further down the road, as far as you can. Don't give up the fight. Take time and be with your loved ones and most importantly spend time with yourself. Hugs and my very best to you. Thank you for thinking of us in such a time, appreciate it a lot.
Thank you Cleodman. I think that was the most inspiring and helpful post I have ever read on this forum. God bless you and your family. May you go in Peace.
Thank you!! Your courage and strength is incredible. My prayers are with you and your family. As a physician with advanced prostate cancer I truly appreciate your opinion. Care for this disease should be from trained physicians. Not from individuals who believe they know more than physicians simply because they have access to medical literature.
to Cleod-man,I guess you know by now that I fight my two cancers with HUMOR. So I wanted to ask you if you're wonderful post is pro bono or like a typical doctor you're going to bill us for it?
Now this is for you and your dear wife (pro bono):
*** Click on the title of the video on top to play the video ***
Thank you! I am grateful for your wisdom and compassion. Your words have lovingly touched me. My husband came to a point in his treatment where he could no longer support his quality of life. He died peacefully in his bed surrounded by family. I was lying next to him and hugging him tightly and our daughter was lying next to me and hugging me tightly. Peace and love to you! 🙏🙏🙏
Thank you for the honor of your brotherhood in our Malecare community. I have “pinned” your post for others to easily find. Wishing you and your family peace and love.
I love your post. I am a wife trying to do the best I can to help my husband navigate all of this. You have stated so much in 'simplistic' terms that is so perfect.
I struggle with survivor's guilt. So young to have to kiss your wife goodbye. I know she will help you to gently finish your journey. Your words of wisdom ring out to all of us. Sweet dreams.
Thank you for sharing your hard-fought wisdom with us. It is very kind of you to think of others at this time. I wish you peace and contentment with your loved ones.
You are a very kind man...Even in last part of life, you have helped fellow human beings by your meaningful, mature and wise post. Best wishes for remaining journey.
Thank you for this post. You’ve been very brave throughout your journey and I’m sure your pointers will help a lot of us here. 🙏 Wishing peace to you and your family.
OMG this post affected me mentally and psychologically like no other post I have ever read. I'm tearing up as I write this because I know I'm just a short time behind you.
My prayers out to you brother. In the end we are all terminal and just passing thru. That said, number 9 of your final wisdom really grabbed me and slapped me in the face. Thank you.
Like Morgan Freeman said in Shawshank, "get busy livin, or get busy dying".
I salute you Cleodman, sincerely. Excellent and clear advice. Clear-eyed and courageous. I will share your points with the gentlemen and their spouses in the support groups I participate in. Regards, Phil
Cleodman, Your post has touched me more than any other post on any Pc site. And I have been on for 8 years, seen literally thousands of posts. I too, though good for now, see the finish line nearer each day, instead of far far away. Your advice for us all is astute and moving and insightful. I just wish I followed your journey closer over these past four years. You have truly "fought the good fight". Per Webster, this definition is: Do your best; do what is morally right. ... It comes from the Christian religion, so it is deeply rooted in morality and evangelism. Someone who is fighting the good fight is working tirelessly to try and make good choices and help others. You, my Brother have done that for us all, and we will be forever grateful.
Peace , Love and Strength,... "there is another in the fire" with you!
Thank you for your truth. You've lived a good life. May you know you have made a difference to others with your authenticity. Beam you up Scottie! Peace be with you and your loved ones. N
Thank you for putting up such a detailed post. Particularly with your situation. I agree with your comments which make a lot of sense to me. Thinking of you and hoping they can make you comfortable in your last part of this horrible journey. A month after my RP I ended up with sepsis and clots in both lungs. There was a night I thought my time was up and I asked my sister who was at my bedside if she believed in an afterlife. Her response was a comfort to me. She said that, if there was she believed she would be okay as she had always tried to live a good life and if there wasn’t she would also be okay as she would just be gone. Thinking of you. Bill
I hope I have as much bravery and clear eyed vision when and if I reach that stage of life. You are a role model for the rest of us on this bloody awful journey.
The world will be a sad place with you not in it. Thank you for all your posts, I have followed you with such respect, admiration and heartache too. Peace to you and to your family too.
Please continue to check in.
If miracles happened I would pray for one for you.
Cleodman, having only recently joined, this is my first post to you and I regret that it is. I have read much of your writing on here and it is chock full of honesty, bravery and sage advice. I wish you clear skies, smooth seas and a following wind for the rest of your journey. Please know that you have helped me generously, greatly and given me hope in a dark, dark place. I wish you the very best.
Thank you for sharing your heart and soul. As the primary caregiver to my love for the past 11 1/2 years since his PCa diagnosis, I especially appreciate the advice to check off items from the bucket list. I’m going to look into planning a trip to the USA west soon!
Thanks, too, for the reminder to honor and value those who are in it for the long haul, walking side-by-side with you guys through the illness and treatments.
Cleo I just read this Have not been on this site in a while.. I am so very sorry to hear this.. I know you’ve fought this so hard and it pains me to just hear..You and your wife in our thoughts and prayers
So unfortunate and sad that Cleodman's journey, followed by may of us here, ended and he did pass. He wife courageously picked up the mantle and made follow-up posts as Cleodwoman. RIP!
Peace and Love to you too brother. I was moved by your sage advice, and have taken it to heart. I have yet to experience Chemotherapy, but am on a Zytiga/Prednisone treatment coupled with ADT after posting a PSA of 676, 18 months ago, and having RT for spinal metastasis . I have saved your post, and your words will accompany on my journey .Arohanui
Thank you for pinning this post admin. Every now and again I need to read this, such great advice and it helps me keep my perspective in the right place.
I thank you so much for your post - never read anything similar before - so impressive! I only disagree with one statement. When you say, so many US people think they know more than their MOs, you don’t know Austrians. 😉 Austria is this tiny country in the heart of Europe, don’t mix us up with Australia, where everybody is the best soccer coach, basketball coach, epidemiologist and of course MO.
You don’t walk alone. I‘m sure all of us are with you for your next part of your journey. And who knows, sometimes things don’t work out as expected. If you decide to continue posting, I‘m one of your (many) followers and supporters.
P.S. Sorry for my simple English words, my mother tongue is German.
I thank you so much for your words. Your insight has been very helpful to me. It has encouraged me greatly, as right now I did retire and am doing what I have always wanted to do. I'm enjoying my family and friends. I'm blessed with an amazing wife as well. The one area I need to work harder on is my fitness. I've always been in good shape, but this hormone therapy has handed me someone else's body. What you have said greatly has encouraged me.
I wish you peace and love in this time. God bless you.
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Somehow I think you will find a way. It was always really nice of you to tell us all whats going on in your life. 
Anyone have experience with Xtandi? It’s the last treatment we have to try. 
Ten days of the antibiotic clendamycin lowered my PSA for 3 months
Radiation treatment 5 days a week
First Day of Retirement
