As a long time PC survivor and with the clock ticking, I want to do something to move us forward in the fight against this disease. We have huge amounts of data and information sufficient to create a guide for all to use. We are wasting, as are most docs in the game, huge amounts of time and energy in repeating the same mantra daily, as the many posts on this site demonstrate.
PC, as you are all aware, is a common disease that follows, for the most part, a pattern as it consumes our bodies. There is no magic involved in how it invades and evades capture. Once it has returned, or spread, it is a lethal enemy that we cannot defeat on our own.
What is needed is a concerted effort to build on the foundation that those who have gone before us built before their demise, and ours to follow. We will not be able to save ourselves, but surely, with our demise, we can do something for those to follow.
We spend far too much time on this site in going in circles-in my view. Venting is fine etc. but it does not lead to progress or action. Nor does false hope that some treatment modality is a magic pill, for we all know there is NO cure for PC once it has spread.
I am being blunt here because of my frustration at the waste going on as men come to terms with PC.
We need a plan of attack, to get organized to present the FACTS to men-and their families etc.
We must get focused in order to do the most good. Right now, are are shooting off in all directions and accomplishing little-my view again.
With help, we can set up what I propose easily and maintain it over time. It will help all of us as well as for medical to be able to keep up to date.
We have a huge bank of knowledge and experience in the battle, but it is being wasted as we keep going in circles in repeating the same things, often creating more confusion in the process. This delays getting prompt treatment, creates more stress and strain on both us as well as the medical system, wherein far too much of their time is spent on repeating the same scene.
I am thus proposing:
1. set up a guide that can be used for the newbies in getting started on the battle. This is easy to do, as there are not a lot of options, but someone has to take the lead on this.
2. set up a guide for end stage men, that includes the most up to date treatment modalities in a tight package so it is easy to use and follow.
3. work towards supporting those researchers who show promising results by getting more of us onto drug trials as soon as possible. it is taking far too long to fill up most trials and these delays are slowing progress in the battle.
4. set up a guide to assist men in coming to terms with dying of or with this disease, and in promoting living large with whatever time remains. We can feel sorry for ourselves or choose to live large while the battle consumes us-this is a choice we can all make.
5. set up a guide to handle the final days in the battle. This is a tough one but I feel must be done, because few seem to want to talk about their impending demise and face the fact of PC probably taking their lives earlier and/or much earlier then would otherwise occur. This refusal to face the facts, again leads to lost time and energy as some attempt to find some magic pill, when there is not one, at present.
I see no point in denial, in fact, see great harm as noted above. It is not easy facing death, but until and unless one does, one cannot focus on living and getting one's bucket list checked off.
Please chew on this post and give me your thoughts. Daryl, not sure what shape you are in, but I will whatever I can to help set this up, hopefully with you as the lead. We again, have great talent and skills within our group here that we need to organize and become an effective fighting machine, at all levels.