May 21, 2001 The Unfortunate Club: or, Who Needs A Mets-Only List? Masked Patient

There are always reasons to be afraid and hopeful, but these are the same reasons for finding ways to hear the truth without the pretty packaging. Women with metastatic cancer -- mets -- are sometimes not welcome, in some support groups, because they represent all the difficulties and failures in the treatment of this horrible disease. The newly-diagnosed simply don't want to think that it could happen to them... but should denial be pampered? Debate continues.

In July 1998, Gilles Frydman of Acor.org created Club-Mets-BC, a mets-only list in response to growing evidence that there needed to be such a place, where mets patients could be open and honest, no matter how hard what they had to say might be to others to read; where there was no requirement to be uplifting or positive or anything. If someone felt scared, or terrified, with or without reason, they needed to be able to say so.

It can be difficult to jump into the middle of what may seem like and endless series of negative postings, but it is very important that any subject can be brought up. If not here, then where will these questions be asked --the questions that the care-givers don't want to hear?

Mets patients are bonded by common concerns, and usually common respect, as well. They are not easily offended. Instead, they laugh and cry and, surprisingly often, they feel genuinely heard as they share the small details of their lives with others who are willing to so share. It works as well as it does, because sometimes the knowledge of awful things makes awful things easier to bear; and also because, sometimes, no matter how wonderful a family or an old friend might be, one just doesn't want to go to their wells of strength too often... And this list is waiting, at all hours of the day and night, another, very deep well, with some of the sweetest water anywhere on the road, an inn of support and love and collective strength which has kept hope alive for so many facing the circumstances of despair...

But enough of prologues. The people on the List are more than able to tell you why they would not want to be without their virtual meeting-hall...

• "If I learned one thing from this, it is that we ALL have something to contribute, no matter how small. You never know who you may help! I wish, back when I was first dx'd, that someone had shared with me the honest reality that this beast would probably spread. For almost 5 years, I lived like I was home free. What I would give to have known then even part of what I know now. Don't get me wrong, I wouldn't have wanted to be scared into believing that having breast cancer was an immediate death sentence; but I do wish I'd been better educated about the possibilities. Then, maybe, when I first felt that achiness in my shoulder, I would have been in to see my onc, rather than waiting to dislocate my collarbone to find out I had mets. I never even knew that it could go to my bones, or that any achiness should be questioned. I just believed what I was told. I did ask questions, but in hindsight, they were not the ones I needed to ask. I could have done some research on my own, but instead, I was lulled into a false sense of security. Now I investigate things more thoroughly."

• "The medical profession often seems to want to believe that they have the Beast under control, but they do not. I was 'NED' (No Evidence of Disease) for 9 years. My onc. had said that the possibilities of recurrence at this stage were almost nil. Then I started having gastro-intestinal problems. It took two oncologists and a gastroenterologist several months to confirm that it was breast cancer mets. They could not believe it, so my biopsies were examined by several pathologists. The real 'final confirmation' was months later.. when they found mets in the bones."

• "With doctors and such, the important thing to remember is that we pay the bills. They work for us. Since I joined the List last July, I have learned more from the List than from 6 years worth of doctors! I even went back and got the pathology report from a surgery I'd had years ago-- and discovered that, unbeknownst to me, I had dx'd with metastatic bc, invasive ductal & lobular, in nodes... There were decisions made back then that, had I known the full picture, I might have made differently. I'm a grandmother, not a child. I can handle whatever comes my way -- not always easily, but I usually get a grip fairly quick. We have little enough control over the progress of our disease, the things we can do something about, we ought to want to know. We deserve the opportunity to make the best decisions open to us."

• "Maybe my input to the List gets flimsy, but sometimes I just do not have the energy to participate. I may not acknowledge posts, but I read them, and think and pray for all of you. Without you at my fingertips, this life would not let me keep my spirits up. There is so much for all of us to go through... To move on this road can be like a relay race. We catch the bat as we travel past the pitstop."

• "We are the main part of our recovery; and the paths we take are going to make our doctors continue their own education. I remember when I was first diagnosed, I came home, got on the computer, and read, read, read. When I went in for my follow-up appointment, I had a handful of documents and questions. My oncologist was taken aback and didn't know quite what to do. What came from that, however, is that my team of doctors does not just give me 2 or 3 word statements anymore, because they know that I am going to come back with e-mails from the List, and other info from the Internet... We have to be our own advocates, and fight, fight, fight."

• "We celebrate so much the beginning of life, why is it we have such difficulty celebrating its end?"

* * * * * * * * * * * *

Many persons contributed to this report, among them: Cheri Alford - Alexandra Andrews - David R. Bradley - Sandi Caverly - Merry Holley - Doreen Jaskela - Gayla Lacatena - Carol Minor - Karolen Paularena - Sheila Werner - Graciela Zarate

Metastatic Breast Cancer Online Support Group (Club-Mets-BC)
http://listserv.acor.org/archives/club-mets-bc.html

Patients diagnosed with metastatic cancer
http://listserv.acor.org/archives/metastatic.html

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