Hello Al,
Thanks for your reply to my previous comments and post. Indeed, all of us as PC Patients are on our own journeys. We are also a community of patients dealing with PC the best we can along with the expertise and experience of the various treatment protocols we pursue with the aid of all the physicians and specialists who treat us.
Just a little background on myself and the past 30+ years of personally experiencing serious disabilities resulting from CHRONIC FATIGUE SYNDROME, FIBROMYALGIA and CHIARI MALFORMATION.
You’re exactly correct about my passion for facts and straight forward information. If I come off a “bit too strong” and or appear to be “too aggressive” in my comments and assertions etc. A lot of that has come from my experience of dealing with the above maladies.
There has been so much mis information, disinformation horriffic assertons and assumptions along with excessive doubt and disbelief that these serious illnesses were not even considered as legitimate disease states until about 10-15 years ago. Give or take 5 years on either side of those time periods depending upon which disease and aspects related to them one is discussing. Partly because CFS and FIBROMYALGIA share a lot of the same characteristics and symptoms. Without question, my personal experience along with my fellow patients have been instrumental in shaping my zealous nature for the facts.
When patients like myself were simply dismissed as “psychologically impaired” and everything we were experiencing was “just in our heads” and we didn’t really have any legitimate medical problems etc. That will have and has had a tremendous influence on me personally as well as the community of patients who’ve experienced much of the same “illegitimacy” and “personal dismissal” etc, As you can imagine, this lack of compassion along with no standard methods of diagnosis, causes for these diseases and or effective treatment options for a recovery will in fact…….get one pretty fired up!
Now that 30+ years of studying and researching these diseases have finally determined and recognized their legitimacy and have been accepted by the majority of the informed medical community etc. Everything associated with them are viewed in a much different light!
The exception being CHIARI MALFORMATION which wasn’t so much dismissed as it was more in its infant stages of understanding and available treatment options.
I am still and remain seriously debilitated from these disease states.
Ironically, when I got my PC diagnosis, I was and remain much more relived about it because there is a lot of history and experience in the diagnoses and treatments for it.
Of course, nobody wants to get a cancer diagnosis or go through all of the treatment options for it. However, as a patient, you are never doubted that you have the disease or dismissed as a person for contracting your PC.
Thankfully, after my Radical Prostatectomy in October of 2022. I am still in remission and my PSA has remained at < 0.014 since my surgery date up through and to today.
When other PC Patients on this website, (all at different stages in their disease and experience), ask a question which I feel I can be of some assistance or benefit to them by responding to their concerns through my own experiences. I will certainly do the best I can to empathize and inform them based upon my knowledge and or experiences about it.
As you so eloquently described in your comments, I don’t hold myself out to be an expert about anything related to PC. However, I have taken the time and made the commitment, (I still do), to be as informed and educated about it as much as I can.
I’ve learned a lot by reading the comments and posts made on this website by our fellow PC Patients through their experiences and knowledge. I love the fact that all of us in our hearts and minds are just trying to be of service and assistance to anybody we can whenever and wherever we hopefully have something of value to offer.
Thank you again for your comments and insights.
I wish you and all of our “brothers in PC arms” the very best in their personal journeys for the best quality and quantity of life we can all hope for.
Kindest regards always,
Phil