Just a little Joke lighten up

inkblot said:

Hi Tony:

I have quite a bit to say, as I'm having an inspired moment...just hope it will all post. May well upset that "10 post per page" option though???

I'm wondering if I may inquire as to your status with ACS and whether or not you have a personal cancer history? Do you volunteer as administrator for this site or is it a compensated endeavor? If you do not feel comfortable stating your level of involvement, that's perfectly ok. I'm merely curious and you've certainly no obligation to satisfy my curiosity.

I appreciate your thoughts, as expressed above,
however, I would differ with your point that the construction of this site is not of the greatest importance. I believe it is. An outlet modeled upon open communications, should have certain priorities. Essentially, if people come here to share information or just needing an understanding ear, they're not likely to return if the site is not easily navigable. If someone feels challenged by the format, etc. they simply may not bother to return. (just my opinion) They could lose what could have been a viable and very helpful resource in their recovery/survival.

This is hardly a "research your flu website". It doesn't need to "look cool"...it just needs to serve the purpose for which it's intended.

Often, visitor's here feel that their very lives are threatened, as well as their psyche's and that's a huge responsibility for you guys to address as you decide upon fomats, etc.. If you could understand that some of the visitors here may feel like they're hanging by a thread, at any given time, and then suddenly, something so important to them is changed and difficult to use, well, the feedback is not likely to be all positive. People who are already frayed are going to perhaps be even more easily upset by dramatic changes which complicate their lives at a time when they need simplicity the most.

A programmer for this site must be a bit of a different breed in that they have a deeper understanding of its purpose and value.

It has also been my experience here that very few survivors, more than a year or two out of treatment, visit. As they return to good health and get on with their lives, they seem to no longer return to share with their newly diagnosed
sisters. Most here are in that category...newly diagnosed, in treatment, experiencing recurrence or metastasis. This naturally places the majority of visitors here in a sensitive position. They've likely no patience for complications with the site functionality. Often, every single day matters for communicating.

Regarding your suggestion that we communicate and work to "stamp out cancer"...I presume you're suggesting that we become more involved at the political level. Many of us simply don't have the energy to take our fight into that arena. At least not initially. It's all about the day to day functioning and/or dealing with the difficulties/problems that arise. I support that direct level of care issues must be addressed as we journey through treatment. We must consistently demand a very high level of care. Care which acknowledges and addresses us as "whole" individuals...not just another person with cancer. To change doctor's when and if the one we're seeing is not meeting our needs, not answering our questions or giving us the support we need in general. If we threaten their pocket books, then they sit up and take notice. If we need to change doctor's or hospitals, then we should write to them and detail why they've lost our "business". This affords them the opportunity to make needed adjustments to better accomodate our needs. Doing this can lend a voice to each and every one of us who has been treated poorly, not listened to, not taken seriously, etc.. This is action we can all take, anytime it becomes necessary and help our unique community on a larger scale.

We can also write to, fax or call our Congressmen and Senators regarding legislative action which can potentially benefit cancer patients. However, your average Joe/Jane Citizen would not be likely to be offered the opportunity to address Congress. At least here, in North America, one must be a celebrity, or very rich and powerful to gain that particular ear regarding illnesse/disease issues at the legislative level. How many average citizens have we seen addressing Congress lately? Also, because we are one of the richest countries in the world, free enterprise reigns and we're more likely to be asked for our money than for our opinions. This is not necessarily good or bad but simply how the hub of our particular system turns. We must all jump onto that hub at whatever level we feel comfortable and take whatever positive actons we feel we are able to take.

Perhaps some of our energy, which we'd like to devote to stamping out cancer, could begin with environmental education and strong action on that front. The reasons? Millions of acres are slashed and burned every day, globally, as we try to satisfy our greed for wood. How many precious, as yet unknown and unidentified plants go up in smoke each day? One or more may hold the key to conquering cancer! We will never know.
Many lush, tropical rain forests have been reduced to virtual deserts now. Gone forever, taking any medicinal secrets, together with the decimated species of animals which once lived and thrived there, down the logging road. All just gone.

Pollution is another devastating issue. How many cancer cases are known or suspected to be due to environmental toxins? Astronomical increases in the number of childhood asthma cases. How many birth defects are are due to those same causes? Yet our leaders, fully aware of these health consequences, continue to promote, aid and abet the biggest of the big business polluters. It's sadly a matter of greedy societal thinking. Money first, health later. Healthy economies are not synonymous with healthy people. We must fight for clean air, food and water. Our government issues warnings regarding tuna, for instance, and how seldom it should actually be eaten, but you won't find that info on the label of a can of tuna. Matter of fact, you'll have to search to find this kind of info. How many people know that the mercury contained in tuna cannot be eliminated by the human body? It has a particular propensity for accumulating in the liver and there it remains. If we aren't informed about the risks, then we are rendered helpless to take any measures to reduce our risk of exposure. You can find some stats on these issues at any EPA, Dept. of Fish and Wildlife or other such government sites and/or links to official gov't. reports through various environmental organisations.

We so need renewable energy technologies. Cleaner, safer, less polluting fuels. Yet the countries and companies devoting resources to just that are few and far between. Why? Because big oil is big money, big jobs and big profits. At the expense of our and our children's health???

My lengthy point is that it's not just all about those of us with cancer. It's also about those of us with many other environmentally induced conditions/illnesses. It's about the sad condition of our environemnt. The ONLY environment we have. It's the only place we have to live, love, laugh, raise our children,
breathe, nourish our spirits, and our bodies.

Until we can move toward becoming a society that can be less greedy, less materialistic, less selfish, and become more protective and respectful of our environment, more giving to others and less absorbed in ourselves, become more cautious consumers, less focused upon "things" and more focused upon leaving the earth better for our children than we found it, we cannot hope to conquer cancer or much of anything else.

I have no doubt that one day, someone will discover far better treatments than we have now for cancer as well as many other maladies. I believe that one day, cancer will be treated much like, say, diabetes. Our quality of life, once we have cancer, will become more normal and require only "maintenance". Drugs will be developed which will keep it under control. Simpler tests will also be developed which will monitor our status and tell us how much self medication we need on any given day. I believe all this will happen long before an actual "cure" is discovered.

In the meantime, we work with what we have and are grateful for it. But just maybe, by becoming more environmentally conscious in our daily lives and joining forces with other like minded people/groups who work hard to protect our environment, that cure may be found sooner and we'll all be healthier on a daily basis. Before a bulldozer destroys all traces of its existence. Before it is dug up in the making of a road to haul the tress out of our rainforests...it may be found in a marine lifeform, before that lifeform is polluted into extinction. While our fauna and flora continue to be so thoughtlessly destroyed, there's less hope of finding a cure.

Many of us have (and will continue to) walk in the various and sundry cancer fundraisers, etc. and contribute in whatever ways we can, but ironically, cancer can also be financially devastating and some of those effected by it simply cannot afford to contribute on a financial level.

The fact is that the amount of funding for cancer research is staggering, globally. Potentially new treatments are being investigated on almost a daily basis around the world. Standard treatments are being considered in new combinations. There are trials for virtually every type of cancer known. The patient naturally assumes all the risks, as well as reaping the rewards if it's successful. No monetary compensation is available, however, for the PATIENT. Not even free treatment. Rather, costs and who will cover it becomes an issue for those even considering trials. The amount of funding available and the progress which has been made in the last 30 years, is phenomenal! However, it is also BIG business. Administrative costs are big ticket items as are some grants for ridiculous studies which have absolutely nothing to do with cancer at the cellular level. Everyone naturally wants "their" piece of the pie. And it's a huge pie. Drug companies eventually realize profits in the billions for drugs which prove to be successful.

All of us here are grateful for this site and others like it and we depend upon them for helping ourselves and being able to try to help others. So, this site really must meet the needs of those with cancer and those who love and care for them. Else, it really has no purpose. Just in case the "programmers" don't already understand this perspective, please enlighten them. As the system administrator, you must "go get em" on our behalf.

Soooo, it would appear that Pandora's Box was flung open here, but that's how I feel about this site, your suggestions regarding alternative methods in which we may fight cancer, as well as some ways I feel we could also be effective in the overall, big picture fight. There's a lot more ways to do battle than through organisations with the word "cancer" within their names and we're certainly a spirited enough group to tackle whatever we believe to be important. And I should certainly HOPE that CSN, via it's sponsor, ACS, should have no difficulty in taking the initiative regarding patient, insurance and other issues which are of great import to those of us dealing with cancer in our lives.

Thanks for the ear and I'm glad you're here.
Ink