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

Hi Joanna, I re-read my post and it came across wrong. I was actually responding to Brett, who talked a bit about medical understaffing at larger hospitals and how he had to ask for certain things at one of the bigger and better centers. I was saying how I felt like I got more personalized treatment from just as qualified doctors right here at home. Why I didn't type it exactly this way the first time will remain a mystery.........chalk it up to trying to do to many things at once on this wonderful evening in Va. Beach. I'm with you, I didn't need all that some centers have to offer.
Minnie

Friends, in my discussion, I'm not talking about yoga, tai-chi or acupuncture or other things along the lines of "alternative" care. I'm sure those things have their place for some people, but they are not necessarily for me and I don't believe they belong in a scientific treatment setting. I am talking about treatments and possible cures that are based on hard science, where the "big three" don't necessarily play the primary role.

I also want to say that the standard of care for my treatment was top notch. I believe I had some of the best medical minds in the world working on my treatment. But that not's to say that it could not have been improved and it's not to say that we don't need a paradigm shift in the standards of treatment and care.

No, I am talking in much broader terms from a very personal perspective. As an example, if I were to present with a recurrence, chances are the treatment they would be talking about would be surgical salvage, perhaps more chemo, perhaps more radiation (which is new thinking in terms of re-irradation). The point is there are other things out there that are less invasive and less destructive that could possibly be more effective, but these things are not at the top of clinic trials. Most clinical trials still involve conventional treatment methods, which are based on killing the tumor rather than treating the disease and the person.

Bob, I share your feeling of the sword over my head. Which is why I put my fingers to the keyboard in this case. I'm hoping that my fears are being constructively utilized.

In terms of what to call me post diagnosis and post treatment? You can call me Brett.

-Brett

thanks for the replies, everybody. i hope we can keep this discussion going.

by bringing up the issue of terminology - "people living with cancer" in place of "cancer survivors" - i meant to point out that the name is a direct indication of the way of thinking. the term "survivors" implies notions of calamity and disaster. i wish for people who have one or another type of cancer to "live" not just "survive," regardless of however much time they may have for that. while "survivors" also implies notions of courage and resiliance, neither courage nor resiliance by themselves do much in terms of the material realities of living with or dying because of cancer. in fact, much like the rtv series "survivor," the term places the burden on the individual rather than on the society, so that in very concrete and material ways, people are left to their own resources to survive. there were a series of postings in a recent thread where many people talked about their struggle to pay the medical bills while dealing with illness. this is only one example.

i'm not insisting on the term "people living with cancer," but i think a change of paradigm requires a change of identity. we need to be thinking of ourselves in terms of the quality of our lives. i practice yoga, and have no doubt that yoga as an exercise in relaxation and meditatin can be very helpful to people with almost any illness. however, i don't think yoga practice fundamentally changes anything about the physical effects of dominant treatment methods nor the fact of their failure. by the same token, the intentions and skills of individual oncologists and medical professionals also change very little in the larger picture. the fact remains that if one goes to any major cancer treatment centre, top notch or otherwise, they have very limited ways of dealing with cancer, all variously involving the knife, the radiation machine or different poisons. that these methods are effective in some cases, short- or long-term, also does not change the fact that the current medical system has not yet offered a "cure." i'm convinced that things will stay the same so long as they stay the same. more research money put into this chemo drug or that, or this radiation technology or that, etc., will not necessarily lead into a "cure." meanwhile, my sister has to live against the illness while having been gravely debilitated by the various treatments. i just can't get over the profound irony in that ... so, i'm going to scroll to the top now and read rilke's quote again ...

"It is a question of experiencing everything. At present you need to live the question."

i'm living it, i guess. in a way all of us are. whether we're resigned to things, have found new meanings in them, or rebeling against them, we are living our questions hoping to find answers.

be well.

gita

This is a great thread. I've always wondered why no one seems to be addressing the possible underlying causes of my cancer -- i.e. how did I get it and how can I make sure conditions aren't right for me to get it again.

I've been more than pleased with much of my care, but it does seem like the medical community has one goal -- get the tumor out -- rather than get the tumor out AND rebuild the patient (nuitrition, exercise, change habits, mental rehab, etc.) so that it's in a stronger position for the future...

I'm still kicking around the idea of being called someone who is "living with cancer." A friend of mine told me a few weeks ago that he admired the way "you live with your disease." And that kind of turned me off. I'm not trying to live with it, I'm trying my darndest to get rid of it! Of course, I am trying hard to live with the consequences of treatment (physical and otherwise). Anyway, still pondering all of this...

Eric has expressed how I feel with the words I couldn't find. Thank you,
Minnie

To hell with this "living with cancer" stuff - I want the damn thing DEAD! I didn't go through all of that misery to "live with" it. I want it gone -I don't to live with it any more than I want to live with either of my first 2 wives. As far as the "cancer survivor" thing goes - I use the term loosely for the ill-informed who want to feel warm and fuzzy that one of their own flesh & blood could actually "beat" cancer (and they probably watch too much reality TV and action movies). I am changed person and I'll never be the same as I used to be and maybe that's ok. I can live with being labeled a changed, humbled person, the other labels I can't relate too. Maybe just the "living" part will do...

Agree, Gary, I don't want to be reminded constantly that I'm living with cancer, a cancer survivor, or what have you. But, it's in people's nature I guess to be concerned. Couple of days ago I was chatting with one of the other board participants and mentioned going in to HK on Saturday. Of course they were concerned, wondering if I had a doc's appt, at I appreciate that. But, no, I didn't have a doc's appt, but needed to do some shopping, see the accountant, and get my blueberry pancake fix at a particular restaurant.

But, it reminded me of how automatically we jump to conclusions with this disease. I'd some how like to move on, but the question is how?
Bob

A very ineresting thread indeed.

I can give you some thoughts from a guy who has a reoccurance and was told it was uncurable. I am not the first one with a reoccurance and I won't be the last. I have come to realize I am not special, I am not immune to an early death.
The anger part didn't last very long in my case. It was so much easier accepting reality than wasting time crying over spilt milk!

I have grown more as a man and a human being in the last year than in the first 53. When they slap you in the face with the reality of your situation it wakes you up real quick. To be able to share my fears, be supported and loved is a special thing. This forum provides that. It cannot be measured.
We live with the decisions we make. We try and survive but as we most recentely found out, Some of us don't. I will always remember Heather, Packer66, Russ, Scott, Marcy, Lynn and all the others who fought the fight only to lose in the end. I am happy they suffer no more.

Thanks for letting me ramble on and anyone with a question about my condition can email me anytime.

Yout Friend, Danny Boy

Hi Bob,
The first thing I did was tell everyone who asks to stop asking "how are you doing". I sent emails to all of my support group as well and told them that I wanted to return to as "normal" a life as possible and that meant being treated like a "non cancer" person.

Sometimes it's tough to come here everyday. It's not surprising to me why some have to "vanish" after this experience (although we would like to hear their success story).

I guess I have taken seriously that scriptural mandate of being in service to others. This all started prior to the big c when I was a recovery group facilitator, AA group secretary, primary caregiver and trained lay Christian counselor. I don't always like it but when God calls - you go. It seems God puts these challenges in front of me (as well as He does all of us) and it's what we do them them that will give us hope and purpose.

Danny certainly idealizes that concept with the grace he shows us constantly with his generous service to others in spite of his own predicament.

Hi everyone
OK maybe today is not a good day for me, I have run out of pretend confidence.. I don't want to be the brave face anymore..I want to be able to freely admit that I am scared of the surgery to come and scared of the effect it will have ont the rest of my life.. I know that this is the wrong attitude but I don't care it is how I FEEL, my family all pretend everything is fine and my husband is convinced I will be up and about in side two weeks.. S*** I don't want to be doing this at all, and I freely admit I'm now a fully fledged whimp... So great for everyone who can handle this better than me, lets hope that in a few months time I can look back on this post with a better frame of mind..
OK I've vented...
Sunshine... love and hugs (I need some right now)
Helen

Helen,
You have far more strength then you realize. Keep talking about it and sharing how you feel, that in itself will help.
Love, Minnie

Thanks Minnie
Came back to try and delete that last post, I was full of anger when I wrote it and of course you never can take anger back..Just dealing with everything badly at the moment, everyone is still leaning on ME, and I've reached rock bottom, still if that's true the only way is up.. right trying to kick my own rear end.. if that doesn't work, well there is always the red wine...
love Helen

Helen -- thanks for sharing your true heart... let it out, friend... There are days and times when I feel this way as well, and others around me don't understand and try to "prop me up," etc. But sometimes you've just got to call a spade a spade -- this sucks at the moment and I'll get over that feeling as soon as I get my feelings out, so let me be, etc....

There is an author that I read a lot right after college, whose name escapes me now. He was an Ivy League professor with a grand resume, but felt God calling him to minister to a community of (not sure of the politically correct word for this) handicapped adults, who didn't really care about his resume but just wanted someone to talk to, be cared for by, etc.

Anyway, this author went through a period of depression as he made the adjustment to his new life's calling. And no one seemed to be able to provide comfort to him except this one Episcopal priest, who just allowed him to lay his head on his shoulder and cry whenever they met. The priest never really said anything, but just let him be, let him process, etc. Sometimes I think we need more people like that priest, folks around us who just let us be through those tough times without turning into Mr. Fix It -- "Well, what you really need to do is..."

Anyway, sorry to ramble... And thanks again Helen for being human with us and showing us all how to be human through this crazy stuff...

Helen, Glad you could let your guard down for a moment. I can tell you that I believe we are all afraid of what is or is about to happen to us. The unknown always scares us, us being humans, that is. Every treatment that has been done has scared me. Anytime a doctor comes near me with a sharp implement my heart rate goes up and my breathing quickens. Even when they were just going to remove my peg I was very freightened, and that was a piece of cake. The only way I have found to deal with the fear is to pray that God will be with me and help me and support me and pull me through the experience. That seems to alleviate the fear to a large degree. Once I admit that I am not in control and that a supreme being is in control, even to the point that he will answer my prayers and direct the doctors skills to be successful in the coming procedure, once that has occurred, I can relax and have faith in the outcome. This strategy may not work for everyone, but it sure has worked for me. Even during rad, I spent the entire 15-30 minutes on the table praying for support for me, the doctors skill, the destruction of the tumor, help for all of my fellow patients, and before I knew it, the procedure was over and I was back to it.

I also don't worry about other people asking me about the disease or constantly reminding me of it. I beat it and it is now time to get on with the rest of my life. Don't have time to sit in the soup and worry about it. If others ask me about it, I reply, and then move on. Who cares, after all, as the disease was defeated by a very competent medical team. And it is time to move on now. And it is my job, not theirs, to do what ever is needed to recover. It was their job to fix it, and it is my job to get back to as close to what I used to have and be as possible. Somehow, I don't think Lance Armstrong worried about other people making him better. He took it upon himself to get back his strength, skill, stamina, etc. I bet he also welcomes peoples comments about his disease as that is an opportunity to help with others feelings about the disease.

I also think the Lord may be directing me to help others through the experience of this disease. Perhaps that is why I am in the position I am in. Perhaps I am His tool. If that is the case, I just hope I can do a decent job.

Well, how did I get onto this soap box. Sorry. Helen, just hang in there as there is still work for you to do here. Your posts have always brightened my day and I thank you for that. Don't worry about the upcoming surgery, what will be will be. Worrying won't change anything and will just give you another gray hair. Will be praying for you and know you will be strong and back to us soon after your next opportunity to get better.

Helen,

I'm glad you got to vent, glad you couldn't "take it back." It has to come out sometime, otherwise it's in there banging around in your head and heart and causing all sorts of turmoil!! Trying to be strong all the time is hard.

I recently had a break-down on vacation. I had tried so hard to paste on the "I'm OK" smile because frankly, people can't often deal with the "real truth" of how you feel. They do want to "fix" things for you and sometimes there just (sadly) isn't a fix. I, too, am leaned on by so many. I was leaned on heavily by people during Scott's illness and after his death. My break-down on vacation came out because I just suddenly felt like it was too much to pretend to be "normal." I got so tired of being strong, being leaned on, having all the responsibility placed on me for so many things when the person whom I leaned on, (I finally had a person in my life I could lean on) is gone. What I need is Scott's arms around me, telling me things will be OK, making me feel safe and loved...but he's not here and yes, I had him for a time, and yes, I am healthy and my girls are healthy and financially we are going to be OK. But my beloved is gone and I feel like it's just me in the world (even though I know that is not the case).

Oh, see, I can ramble with the best of them. I know I have a lot to be thankful for, but I still feel like I am "living with cancer" because I now have a view of life and death that has changed me forever.

And for the record (lest someone think this thread has totally gotten off topic) every time I come to this thread or read a post by Gita, I can't help but be thankful she came to us here at OCF, that she is obviously a brilliant and thoughtful person, that she is an old soul (however young she may be), and that she and my Scott would no doubt have been best of friends. Her intellectualizing reminds me of Scott, and I appreciate that beyond what I can say.

So, thank you Gita, for giving us your perspective, your ideas. Thank you.

Christine

Gita...by the way, I love the Rilke quote you chose, and as a lover of literture (as was my Scott), I couldn't resist ordering some used Rilke books through the Amazon link on this site. I'd forgotten how beautiful Rilke's writing is.

Christine

dan, helen and everybody: thank you all for sharing so much. i can't really say much to the experiences, emotions and thoughts brought up by the last few posts because i only experience cancer vicariously through my sister rather than personally. but i'd like to say that i'm humbled by what has been discussed, and by dan's attitude and helen's openness.

i'm addressing earlier postings in the thread also because i want to continue thinking and talking about them.

- i totally understand gary's desire to not be labled. nevertheless, lables are out there and work as markers of where you stand in relationship to the medical governing mechanisms as well as to the larger society. i started this thread in the activism forum because i wanted to talk about changing the mind-set and the system. the terminology signifies the mind-set that runs the system. it seems necessary to look for alternative terms that can emblematize differing attitudes. perhaps there are things that we can learn from other activist campaigns such as AIDS. but i also don't want the debate about terminology to take over. the underlying issues are more important.

- i agree with AzTarHeel's earlier posting in this thread that the underlying causes of cancers are not addressed by treatments. in fact, they're rarely addressed by the medical system except to lable people as "high risk" based on their life-style, so we all know that if you're a smoker and you drink heavily your risk of getting cancer is higher. well, my sister's not a smoker and she doesn't drink alcohol, and prior to being diagnosed, she'd always been health-conscious in terms of food and physical activity. so she can't be labled as "high-risk." then why does she have this form of cancer? most history forms you fill out when you step through the door of a medical facility ask you about smoking and alcohol, but not other potential risk factors. in the case of my sister, for example, we are pretty sure that cancer has to do with her occupation in the fashion industry and cosmetics which exposed her for many hours every day over many years to all the harmful chemicals that go into cosmetics products. nobody is interested in knowing this and talking about it so that it seems like "smoking and alcohol" have become smoke screens for other possible causes. even in cases where the relation of occupational and environmental factors and various forms of cancer have been scientifically established, very little is being done to change the conditions. for example, nobody goes around telling people that working in the manufacturing side of the high-tech industry in silicon valley puts you at high risk for cancer.

- if cancer was a virus, the world health organization would declare a global pandemic as they did recently in the case of the much less wide-spread SARS. given the astronomical number of people afflicted with the illnesses known as cancer, it is quite amazing that so little is being done to change the conditions that increase the likelihood of their appearance. again, environmental, occupational and nutritional factors all need to be addressed if we were to deal with the underlying causes rather than the tumor alone.

- finally, the last few postings seem to me to illustrate the issue that many people have raised in this thread: that is the medical system is ignorant about the psychological and spiritual dimensions of cancer and leaves people hanging here. most of us who've found our way to these boards are privileged and resourceful people otherwise we wouldn't be here. i shudder to think of the majority of people who go through these stages without the benefit of a support network. and i've met many of them.


you are all in my good thoughts for healing and peace. much love to you.

gita

Thanks to you all
Yes I think once I have the surgery I will have a permenent label, it will be indelible and every time I look in the mirror I will be reminded, so I have a choice here, either I look at the scars and think yep I did well I beat this, or I look in the mirror and mourn what has gone, but if I do this at least I stand a chance of looking in the same mirror in 10 years and saying UM.. wasn't so bad and I'm still here to moan about it.. My family Doc, says better to breath air through a hole in your neck than mud through your nose.. so YEP my feet are pretty much back on the ground, and I promise if I get in a blue funk, I will remember you all went before me, and NO I won't let the side down...
SO...
Sunshine.. love and hugs to you all
Helen

christine,

we were posting around the same time, so when i was writing my last one i hadn't yet read yours yet. thank you for such a generous expression of affinities. i am deeply moved, and my face has gone red! i'm sorry to not have met scott, but glad you are here to talk about him. i've had the fortune of crossing paths with some great people here whose humanity has come to my aid in some of the toughest times i've experienced in my life. it is these encounters that have made me realize how frighteningly lonely it is out there, and how important the loose community that we have here. for creating this space, my sincere thanks go to brian. and i thank all of you for being here.

as helen says:
Sunshine... love and hugs to you all.

gita

Rilke is the most amazing poet and I recently used one of his writings in my wedding.

Given the thread above about scars, I want to share with you the quote I just cut out to post in my office by Carly Simon about here breast cancer scars:

"A really strong woman accepts the war she went through and is ennobled by her scars".


Helen-that one is for you.

Kim