| | Support groups Prostate Pilgrims: A perspective on why malecare? by Carl Stark March 2004
Who are we? We who have been prodded, probed and told. We who have been surgically altered, or burned, or implanted with irradiated seeds, or pumped up with drugs and hormones. And those of us, too, especially who, with our cancers, have chosen to wait and see. We are all watchers! Whether we are watchful waiting or waiting to see, nervous, a bit, of what eventually might be... of a re-diagnosis and metastases.
Those of us who worry and have chosen to share, could not have fared so well without the support and input from fellow prostate pilgrims that care. Although watchful, we are hardly idle. To use a currently popular term, we are "pro-active" (whatever in hell that implies). The fact, alone, that we meet and share our concerns, gather information, seek facts, ideas, experimental studies, rumors, fairy tales, anything that might help us, means wešre not just sitting around. We seek better ways to comprehend and live with our cancers, diligently leaving no cancer story, fable, urologist, or oncologist unturned. We delve and want to know, to know what the devil is going on.
The title used to define us, those of us still breathing, is ŗcancer survivors˛. Of course we know thatšs a doctors term, by the same doctors that have given many of us mixed information on our treatments and medications and even diagnosis. Wešve had to seek our own information sources. So, we go to lectures, explore the internet, learn technical terms, Latin pronunciations of drugs and pharmaceuticals. We persist, persevere, and with the deeply felt help of our fellow cancer support group, the ones who have already undergone one cancer procedure or another, who have seen and interviewed some of this country's finest oncologists, surgeons, and radiologists (and sometime egomaniacs) from coast to coast (and overseas, too) we listen, we learn and we worry. And not some wee, silly, simple worry. We worry big, deep and wide. As cancer aware recipients, we worry about everything.
In the beginning it's, why me, will I die, will I be OK, for how long? Then, after deciding on a treatment that a doctor recommends, we ask, what now? What follow-up conditions will there be? Will they change, will I ever pee regular, will I ever get it up again? Too soon we discover there are many answers to our questions, too many, none of which are complete or very satisfactory. Statistics on recovery rates and conditions that follow are varied and uncertain. And then the big question is, of course, will I be cured? (By the way, what is a cure? Another vague classification for survival, from a medical standpoint, measured in arbitrary 5 year segments.) We pilgrims face statistical overload. Although the many choices offered are clear the outcome remains all too uncertain. If you have a bad tooth itšs simple. It can be filled, or extracted. The choices are simple and the results predictable. Not so with prostate complications. Even the diagnostic indicators (digital, rectal exam & PSA test) are vague. That's why theyšre called indicators, I suppose.
It only implies that there may be a problem. And even after a positive biopsy, at this time, unless it has already metastasized, there is no actual way of telling how extensive the cancer is or what direction it will take or the time frame of it's development. Only after surgery can a full determination be realized. Even then, metastasis is still a possibility, a waiting game
So, we listen to the banter, the warnings, and sometimes even threats, of our surgeons or radiologists (the specialists) and why we should take their advise as a path to "a cure". This advise often contradicts the latest statistics or new found evidence from medical trials or tests. If we insist on answers, on sound information, we are treated like idiots. Itšs true, some of us are, at times, but we are concerned, afflicted, caring, hopeful idiots. We want not just answers but a little more openness and some larger curiosity on the art of the medical establishment.
As a group we seek perspective. Exactly the opposite of what our doctors offer. Most are equipped with tunnel vision. It is their specific field where they have focus, itšs their job. The patients (that's us) are only a way for them to practice their trade, a canvas to lay out the lessons theyšve learned and need to practice on. (Why else would it be called medical practice?) As patients we must practice being patient, very patient with their myopic, technical professionalism. They often exclude the whole person, with our specific life styles, diet, nutrition and our fears. We non-doctors are becoming nonspecific experts with a broader vision of cancer, taking in all possibilities from new treatments to experimental ones to altering out lives from where we started.
Without knowing it, or even trying, some of us have become experts. In what, wešre not exactly sure, unless it is just ourselves. But on our individual journeys to deal with our cancer we have accumulated vast quantities of information and varied observations (maybe even facts). Getting a perspective on this information has proven to be a daunting project. The main, and often the only reliable perspective, has been within our male support groups. Each week we cross reference information on diet, doctors, new procedures and medical breakthroughs, along with rumors. The one thing that comes out of all this is that no matter what treatment wešve had (including none at all to date) we know that our conditions are works always in progress. This cancer that is, or was, growing inside us may continue, or most dreadfully, return with vigor. The remedy we seek likely lies within. As individual, curious seekers and worriers, by staying alive, well, and active, we become the cure.
We've a lot to learn and are just beginning to teach our doctors that they, too, need to expand their horizons. We are constantly on our toes and must let the medical profession know that they need to be there as well, right on the tips of their toes, on the cutting edge of what is developing and not to fear the changes occurring that may force them to refocus and broaden their view of what cancer is and what part the patient can play in finding specific answers.
Some of my fellow Pilgrims consider prostate cancer the "lucky cancer". Itšs the best cancer to have if you must have cancer. The time frame for metastasis or tumor growth is often slow and long (measured sometimes in decades before posing a crisis). And this cancer, or any cancer, is honest. It is in your face, it pulls no punches, it runs at its own pace and tells us we are not cancer survivors... not yet. We are system or establishment survivors. After having the be-Jesus scared out of us with a positive diagnosis, and in spite of contradictory medical scrutiny, we go on. We have become experts in ourselves, in who we are and what we are becoming while facing the specter. Our malecare group is like a select, secret society like Skull & Bones, Free Masons, etc. All you need to belong is to be male and concerned and have cancer. Pretty exclusive, yes? Our secret is caring. Wešre finding that we are pretty much on our own when it comes to making decisions. Isn't it much more comforting being on our own together?
Finally, there are some things we are learning. The cure for cancer, at this time, is the same as the cure for breathing- it stops when we do. And even though I know now that malaria kills more people than any other disease on earth, I'm still nervous. I'm having a hard time giving up mosquitoes. I keep trying. Statistics show that auto accidents cause more fatalities than prostate cancer does each year. Therešs another statistic that shows the majority of prostate guys will expire from other causes. Now, I donšt know whether to give up driving altogether or drive like a crazy into oncoming traffic. After all, if disease kills more... but prostate disease doesnšt... well, you get the picture. So many facts to consider.
What is clear from all the research is that all parts of our lives must be considered. All medications, for other maladies, and supplements as well, must be used with caution. We must include everything, even our attitude on life, as a part of the treatment for our cancers.
The rules:
Stress is out, thatšs no rumor Itšs a killer, plain and pure Leave much room for lots of humor There are many ways to seek a cure And no matter the view of the medical minion Always seek out a 2nd or even a 3rd opinion
May we all, one day, be survivors. Support groups |