this post is inspired by brett's postings in the "despair part ii" thread. i decided not to post in the mentioned thread because i intend to go on a tangent here and i don't want to highjack the earlier thread.

first, i'd like to suggest an alternative term for "cancer survivors," inspired by AIDS activism: "people living with cancer." the reason i prefer the latter term is that it puts the emphasis on the 'living" part rather than on the "cancer" part. this is not intended to minimize the gravity of the "diseases called cancer" (thank you, brett, for pointing out the plurality). rather, the intention is to shift the focus onto the necessities of life and the living. perhaps the biggest irony of "cancer treatment" (or the "big three") is that in its singular focus on "killing the cancer"(and healthy cells in the process) it has lost sight of what is needed to live: JOY. this blind-sightedness to such degree that in order to enjoy their life many people decide to stop treatment because in reality the "big three" treatments entail so much psychological and physical trauma.

current established treatment methods have little space for notions and practices of "care." if we look at it even superficially, it is obvious that most of the "care" is provided by patients' communities rather than the medical establishment. this is a division of labour that has put the "care of life" at the mercy of a machinery that's focused on killing. even though this is in the name of saving lives, there are many abrasive aspects to this order of things. in all the research and clinical trials focused on cancer, there is so little work being done on improving the patients' quality of life during and/or after treatment. "people living with cancer" are left pretty much entirely to their own resources in this department. it seems to me that a change of paradigms is most necessary here.

second, i completely agree with brett's assertion that the collective we here must be more than just passengers. as people living with cancer (and i'm including patients and caregivers in this grouping at this instant), we must have direct say in setting the priorities for treatment and care, beyond our individual cases. we should have meaningful input in setting directions for medical research as well as the expediture of resources. i agree that knowledge is power. i would add that power produces knowledge. if we don't have a fair share of the power, we don't have a fair share of the knowledge. that's why it often seems like we learn in spite of the medical establishment. i've learned more from these boards and from my own research than from any of the doctors i've spoken to. and that's not because i didn't have intelligent questions to ask but because they don't have satisfying answers.

on that note, this is a perfect time to end with a quote from Rilke to take us from the politics to the poetics of cancer. i sent this to my sister a few days ago as follow-up to an earlier conversation which i told you about in "a time for positive thinking." i've had this in mind for a few days to post here, but i felt timid because of its obvious ambiguity. it is this ambiguity, however, that makes it work for me because in that it celebrates ambiguity itself. i now offer it as a moment of respite from our many painful certainties and gloomy assumptions:

"Have patience with everything that remains unsolved in your heart. Try to love the questions themselves, like locked rooms and like books written in a foreign language. Do not now look for the answers. They cannot now be given to you because you could not live them. It is a question of experiencing everything. At present you need to live the question. Perhaps you will gradually, without even noticing it, find yourself experiencing the answer, some distant day."


good thoughts for healing and peace.

gita

Gita,

I'm inclined to agree with you about your alternative to "cancer survivors". Over the years since my treatment, I've found that many people who have no direct experience with cancer believe that if you live a certain period of time beyond the completion of treatment, you're "cured" -- you've "licked it". I think anyone who has spent any time dealing with it directly (and certainly anyone who has perused this board for awhile) would be quite hesitant to use the term "cured". Even when you go a good many years beyond the initial cancer experience, you tend to live with little day-to-day reminders of it -- what's referred to here so often as "the new normal".

With the benefit of a lot of hindsight, I can identify with much of what's in your final quotation. When I was first diagnosed with cancer, it came just a few hours after my father passed away (following a long and difficult illness). A few months later, while I was in the latter stages of radiation, my father-in-law also passed away. It was one of those periods of compressed and intense pain in our extended family that had me looking for answers that were not readily apparent at that time. However, in the months and years after that, I found my faith growing in ways it had not before. A while back, my husband and I were reflecting on some of the aspects of life that looked so bleak to us then, and how many unanticipated, amazingly good experiences we've had in the years since -- many of them traceable in some way to the process of living with cancer. That's not to say that every day is now a state of euphoria -- but dealing with cancer has taught me to live life in ways that I had not done before.

Cathy

A great quote. We should put that permanently on one of the site's main pages........ Please be sure that I have the person that it is attributed to correct, so that I may reference it properly.

Rainer Maria Rilke, from "Letters to a Young Poet," letter number 4, full text at http://www.sfgoth.com/~immanis/rilke/letter4.html

Gita, I read your post last night and waited to reply so that my thoughts might settle in. I agree with many of your observations, In many respects our medical community might do better if they really come to terms with the "service" concept. If they had to fight for your business then maybe massage and PT might be a normal offering rather than something we have to ask for. We have already beaten to death the normal follow-up protocols and their limitations. Perhaps they need to be expanded to include radical new therapies as well as "no more, I-have-had-enough" therapies.

Rilke hits several things right on. I have come to realize early on in my cancer life, that we are not equipped to know many of the answers.

Gita,

I liked your post and loved the snippet of poetry. Very appropriate. I agree with everything you say. I think Cathy also makes an excellent point in that living with cancer, whether you have active disease or not, has to be dealt with as a chronic condition. Not only because of the disease itself, but also because the treatments can be so debilitating with far-reaching after affects.

Cancer treatment must encompass the entire organism of the person not just the malignancy. With that in mind and given the plural nature of cancer, I think the entire industry needs a paradigm shift towards a "total organisim" focus. In treating the cancer, focus must be placed on what makes one person's cancer unique and construct a treatment plan from there, rather than relying on "cookie cutter" approaches which ultimately leads to an unacceptably high number of treatment failures. What works for me may not work for you because we are all unique and our cancers are unique to ourselves. Additionally, rather than using new and different poisons or radiation to the point of increasing the risks for other cancers, more emphasis needs to be placed on less invasive approaches to cancer treatment such as methods, which exist right now I might add, that enlist our own immune system to combat the cancer. And cancer research must be more tailored to support increasing and improving these types of treatments.

Cancer care must be structured to provide the patient with all options, not just the one's approved by some HMO. As an example, I had heard about amifostine and I asked for this as part of my radiation treatment plan. This drug has been proven to help preserve syliva in head and neck radiation patients. However, had I not asked for it, I would have never received or even been told about it. And I was treated at the top cancer center in the country. Mind you, I'm not running them down. I think they are doing a great job within the current framework of the industry.

I think part of the problem is the medical community and the oncologic community in particular is chronically under staffed. I think another part of the problem is how cancer research money is distributed, but I'll save that for another rant after I researched it further.

Thanks, Gita, for keeping this thread moving. I think it definately warrents further discussion....maybe from some of the "long ball hitters" on the forum.

-Brett

Take heart -- some hospitals are getting the message. In my small town, the big hospital opened a beautiful, state-of-the-art Cancer Center recently. They offer yoga, meditation, the use of a gym, acupuncture, beautiful harp music, drumming circles, journaling, T'ai Chi, massage, saunas, and a whirlpool -- all under the same roof where chemo and rad are administered. The hospital subscribes to the Planetree philosophy. There are a number of these nationwide, and for my money, worth searching for.

P.S. And now they have a supply of OCF cards!

I was not treated in one of the top 10 or even top 50 cancer hospitals and to be honest I don't feel cheated at all. My doctor has all the credentials of any of the "big" doctors and the facility I was treated at had any equipment I needed. It's a teaching hospital which is also a bonus. I feel I got more personalized treatment as the tumor board I had on my side didn't have 100 other patients like me. Not better care, just more personal. Just my two cents worth.

Minnie, I didn't mean to give the idea that I was treated at the center I described, because I was not, and frankly, I didn't need all that, although many people do take advantage of it.

On the subject of what we should be called, or how we should refer to ourselves, I have already made known my feelings about the survivor lap at the Relay for Life. I had stage IV cancer, but it was not the defining moment of my life. Thus far I have survived. Maybe I will have it again, but for the present, I am simply Joanna, the person, who is very busy with life in general. Cancer occupied my attention for a while, but that was in the past. Now I go for checkups just as I go to have other parts of me checked. I am physically changed, but not in any way that I cannot accept. I found that it was time to pick up my life and go as soon as I got my energy back after tx end. Outside of helping others as we can, I wonder if those of us who are fortunate enough to feel really well should spend much time worrying about cancer. Just my opinion, my style. I most certainly do not want to offend anyone.

Gita I'm another one who fully agrees with your post. I'm constantly coming across people in my work or social circle who are asking, how was the last test. I'm cured, right? I just don't even go into it anymore. And quite frankly, when I take the day off to go into HK to see the doc it could be for any other number of un-cancer related ailments. More and more it's for the lingering side effects from treatment. Which is something people don't understand at all.

I was treated at what is supposed to be one of the better cancer centers in HK, but then again, one really never knows if it's fact or PR around here that establishes the rating. Quality of care was great, treatment protocall seems spot on, and because of the smaller size, I was treated as a person, not one of a bunch of patents.

But despite all that, there was still no emotional or ancillary support available. Nothing to help on how to mentally deal with this disease, how to improve quality of life while going through treatment. I wonder what the next step will be should there be another recurrance, for I suspect that if there is my goose will truly be cooked and unless I head to another part of the world my options in HK would be somewhat limited.

As it is, I agree for the most part the medical community itself pretty much concentrates on get em in, get em out, and keep the costs in line with the HMO payment please. In rare cases the HMO will step in an try and provide some help, especially if you employed by a large company with big pull with the HMO, but for the most part it seems you're on your own.

One organization I like to refer to is a group called "Wellness Community." I had experience with them during my first wife's battle with cancer. Unfortunatly there aren't a lot of branches, but they do help with the "other part" the emotional, mental part of dealing with this disease. Plus, they help not only the patient, but the family and caregivers as well with emotional support. During my first wife's battle with cancer they were immeasurably helpful with emotional support and without the people there and in my support group I would have never made it through the ordeal. I saw it happen with her, and have seen it happen with ohters, the friends and family rallied around at the beginning, but as the time got longer, her health got worse, they slowly dropped off until I was the only one dealing with the situation.

Even though the last scan was an all clear, I still feel like there's the sword over my head, waiting to drop. My wife and I talk about it some times, probably both of us are in some sort of denial to a certain extent. Really though, eventually my time will run out, the question is will it be from the cancer or a crazed Dongguan taxi driver? She started talking about having children last night, one of the reasons is that she knows that as much as she would like that we grow old together, in reality, if nothing else than because our age difference, that won't happen, and children will keep her from being lonely. Culture here is that once a woman is married, if her husband passes away the chances of her re-marrying are very small. Anyway, that discussion kind of got to me, and even though I ignore it, brought back the reality of the situation.

Guess I started a ramble here, a somewhat disjointed one at that. Thanks for listening.

Bob