I think the Breast Cancer Awareness pages are
totally excellent- the Jo Spence stuff was especially of interest to me. I
met Jo about five years ago when she did a talk in derby about her
life/work/ideas etc and was inspired by both her honesty and absolute
determination to assert herself first and foremost as a real person. In
her book' Putting Myself in the Picture' I really identfied with how she
found that class is not just an abstract question but a material fact which
determines how you see yourself as a person. What comes out in the moving
pages you have put up about her battle against breast cancer can also be
read as the struggle that every working class person (both men and woman)
faces to maintain a semblence of control over thier bodies and lives.
best wishes
Geoff Broadway
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Dear Geoff -
It's so nice to get some positive feed back about the things we
hope the site can achieve - often we are faced with extreme technophobia
and a reluctance to even look at the site - but we still feel that it can
be both an amazing info point AND something with far more substance that
people feel is pertinent to them.
Nina
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I think what you are saying is absolutly right - this technology has a lot
of potential to be used in a very positive and human way!
>would you mind if we put your message on the feedback page? we can put your
>name on or not (up to you) it's just we are trying to encourage people to
>discuss stuff through the site and this is the first step... you can say
>no though if you like!
No, I dont mind at all!
geoff
Dear Nina( and hello Marie) I have just managed to look at the"Jo" pages.They look really good. I will send out some notes to various people to tell them its on. What a pity she couldnt see them. Thanks for all your efforts. I think your site is developing very well and compares well with others of its kind. Can you put the pages on a disc when you have time I only have an old slow machine with a small hard disc here at the Institute. I will start putting together the book review thing next week after our photography conference is over. Catch up with you both soon. Best Regards Terry Dennett
>Subject: Breast Cancer and Other Cancer Information > >Community Breast Health Project > >http://www-med.Stanford.EDU:80/CBHP/ > >Cancer is treated as it occurs in test tubes and on lab slides, in cells and >tissue, bones and bodies. In fact, cancer occurs in people. > >The mission of the Community Breast Health Project is to improve the lives >of people touched by breast cancer by acting as a clearinghouse for >informaton and support, providing volunteer opportunities for breast cancer >survivors and friends dedicated to helping others with the disease, and >serving as an educational resource and a community center for all who are >concerned about breast cancer and breast health. The Community Breast Health >Project is grass-roots, patient-driven, and committed to providing services >free of charge. > >This Web site has links to the following information. > >Comminity Breast Health Project (CBHP) Related. > Information About CBHP > Ongoing and Upcoming Events > Articles From CBHP Newsletters > Organizations of Interest > Practical Information > Personal Accounts from Breast Cancer Patients > Medical Issues > Political Activism > Volunteer Opportunities > >CBHP Favorite Sites for Breast Cancer Information > > Sites Specific to Breast Cancer > Avon's Breast Cancer Awareness Crusade > Breast Cancer Action in Ottawa, Canada > Breast Cancer Action of San Francisco > Breast Cancer Discussion List Instructions > Breast Cancer Information Center > Breast Cancer Information Clearinghouse > Breast Cancer Lighthouse > Pat Connelly's (a pathologist at Miami Valley Hosp.) BC Info > Doctors' Guide to Breast Cancer > National Breast Cancer Coalition > University of Iowa Plastic Surgery Dept. > Y-ME National Breast Cancer Organization > >Personal Stories About Breast Cancer > > Stephanie Byram's Personal Story > Nancy Delaney's Breast Cancer Experience > Matuschka's Artwork > Pat Murray's Breast Cancer Experience > >General Cancer Related Sites & General Medicine
>Hi Marie - I've visited your web site - I like it, especially the Jo Spence >pages and the reviews. Not wild about the black background to some of the Jo >Spence pages, though, I need to turn the monitor brightness right up. I did >find that the link from the Well Read page to Terry Dennet had gone - the >usual "404 - not found" - and because I spend a lot of my time proofreading, >I noticed that the Body Shop date was given as *Sunday* 19th. Sorry, I know >it's a disgusting habit, I'm notorious for proofreading the subtitles on the >TV news! Not something that will confuse anyone - and the diary is good. So >is the feedback - I like having it all there - if you want to copy any of >this feel free, it's always interesting to see the reactions of others. I've >posted an email telling people to go and look at it, so I hope you get lots >of hits. > >I've listed some of the pages I find useful - > >http://www1.mhv.net/~delaney/owr.htm >One Woman's Reconstruction - Nancy delaney - tram flap > >http://web.mit.edu/afs/athena/user/p/a/pamurray/www/artbc.html >My experience with breast cancer (illustrated) Patricia Murray - implants >http://darkwing.uoregon.edu/~jbonine/bc_sources.html >John Bonine's web page - Best Web Sites on Breast Cancer >He's just added a link to personal web pages, and I think there may be more >"personal stories" there, but haven't had time to check it out. He updates >the bloody thing about once a week, in between posting actively on the list >and researching possible treatment for friends in Eastern Europe and Israel! >I understand he also holds down a job. > >>http://cure.medinfo.org/lists/cancer/bc_search_sl.html >Search the Central Archives of the breast cancer mailing list >http://www.medinfo.org/ >Has all the archives of all the cancer mailing lists > >www.east-lothian.co.uk/aa/index.htm >A new site posted on the list today created by Max Blinkhorn in Edinburgh - >which he says has info about shark cartilage (not necessarily pro) and which >I have not yet seen. I think it may link to the site he's trying to set up >round the Cancer Caring Centre they're setting up at the Western General - >which was under construction last time I visited, a couple of months ago. (I >tend not to use the Web that heavily). He is also hoping to start a UK based >list on the model of the US list - I've told him that I'd help to a degree, >but probably not to the extent of helping set it up - I don't feel I have >the time or experience for that. I'm also not sure the UK has yet got a >large enough email population to support a list, but I'd guess it will in a >year's time. > >Hope some of the sites are interesting. > >If you need to get hold of me, you can email me at home or phone >lyn in London Hi Lyn, Many thanks for your comments. The Jo Spence backgrounds should be gradually lighter greens, but we tend to look at the site on a high quality monitor while making and then are shocked when we see it elsewhere. We'll correct the Terry Dennett link and the Body Shop date next week (usually I'm the anally retentive one but adding the Jo Spence pages meant sacrificing perfection). PLEASE feel free to contribute to the Well Read/book reviews. We'll prob put some of your e-mail in Feedback too. I'll look at the sites on your list when I'm next in a free-surfing situation (within a couple of weeks). Bear in mind the possibility of an IRC event (in the new year?). Talk to you soon, Marie ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***
>Dear Mary and Nina > >I'd just like to say how powerful I found Jo Spence's photographs. I'm >trying to convey my pleasure at finding something like this on the Web but >pleasure somehow is not in these pages and photographs. I found them >discomforting and upsetting in a way which echoed some of my feelings about >my partners experience of this disease. > >Jo's readiness to reveal herself this way is staggering, even if it is >simply therapeutic for her. Seen in the Internet context, away from the >hype of media influence in my office-cum-back bedroom with my partner >resting her back in the other bedroom, it brought out so many different >emotions. I was so affected by the pictures especially her expressions that >I'm finding it hard to put them out of my minds eye. It just underlines the >luxury of being healthy - people are so lucky these days - it's only until >they suffer something like this that they realise what people go through. >Jo's picture will perhaps widen their understanding just a little. > >I have put a link into my web pages to point to her site - should be live >in a couple of days. > >Perhaps you'd like to take a look at some of the material I have been >working on as a result of my exchanges with the US BC discussion list and >my own vain attempts to find something to haul my partner out the hole she >is in. It's on www.east-lothian.co.uk/aa/index.htm. > >I am looking for sponsorship or some sort of funding to help me get the >time to do more work on it - I'm self-employed (and I don't pay myself >well) and have the time to do it but need to keep my financial head above >water. Please nudge other people my way where you can if you think this >project is useful. > >Best Regards, > >Max Blinkhorn. > > ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-*** Hi Max, Thanks for your e-mail. I will look at your site asap but I can only e-mail from here and scrounge web time elsewhere. Do you have free web space? I think that's the only easily acquired "sponsorship"? That's all we have, we do the site voluntarily. Are you and/or your partner in touch with the Scottish Breast Cancer Campaign? I have met some very positive and supportive women involved with SBBC (their contact details are on our pages). Best wishes to you and your partner. I'll e-mail you again when I've looked at your site. Regards, Marie ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***
>Hello. > >We are helping to put on the first Canada-US Breast Cancer Advocacy >Conference. Would you >be so kind as to take a look at the following information, and, if it >proves useful, include a link to >*our* site on your site and/or display the information directly on your >site. Thank you very much >for your consideration. > >April O'Donoughue > > >"Together to an End", The First Canada - U.S. Breast Cancer Advocacy >Conference > >November 17-20, 1996 >Geneva Park Conference Centre >Orillia, Ontario > >Conference Organizer >PISCES, Pat Kelly, President > >Secretariat >O'Donoughue & Associates (odon@cam.org) > > >THE GROWTH OF BREAST CANCER ADVOCACY IN CANADA AND THE U.S. > >Since the 1980's there has been a significant increase in the number of >Canadian breast cancer groups and research organizations. Each person >and/or group brings a unique approach to the collective effort to end >the >suffering caused by breast cancer. > >In the U.S., breast cancer survivors, patients and advocates have >achieved >remarkable advances through the collective efforts of organizations such >as >The National Alliance of Breast Cancer Organizations (NABCO), The >National >Breast Cancer Coalition (NBCC), and the Y-ME National Breast Cancer >Organization. > >Since its beginnings in 1991, the U.S. National Breast Cancer Coalition >(NBCC) and its 350+ member organizations have dedicated their advocacy >efforts to "work to eradicate breast cancer through focusing national >attention on breast cancer and by involving patients and caring others >as >advocates for action, advances and change." > >In Canada, the 1993 National Forum on Breast Cancer marked a beginning >for >many Canadian activists, survivors, researchers, government bureaucrats >and >health-care providers who were seeking effective partnerships for their >advocacy efforts. Many Canadians concerned about breast cancer believe >that the time is now for a national breast cancer coalition in Canada. >"Together To An End", The First Canada-U.S. Breast Cancer Advocacy >Conference is your opportunity to join in the pioneering effort to create >a national breast cancer coalition in Canada. > >DEFINITELY NOT ANOTHER BREAST CANCER ORGANIZATION > >"Together To An End", is not just another breast cancer event. Rather, >the conference will support co-operation and communication among existing >organizations. By creating a strong, national coalition, built upon the >strengths and leadership of existing organizations, Canadians can renew >all >of our efforts to end the suffering caused by breast cancer. >The findings of a pre-conference survey of 40 key-informants indicates >that >the time has come for a change in Canada's breast cancer efforts. >Canadian breast cancer patients, advocates and caring others are seeking >to >create open communication, collective leadership and vision in the >Canadian >breast cancer movement. Canadians are also seeking ways in which they >can >access and make use of information technology to stay informed about the >rapid changes which affect our understanding and decision-making about >breast cancer. > >WHO WILL BE AT THE CONFERENCE > >The 250 conference participants will come from across Canada and the U.S. >The delegates will include key decision-makers from breast cancer >support, >advocacy and information groups, oncologists, nurses, social workers, >researchers, government >representatives, related industry representatives, corporate >sponsors, media and journalists, representatives from breast >cancer charities and foundations. > >THE ISSUES TO BE DISCUSSED at the Conference > >How might we increase funding for research? >How might we increase access to treatments and clinical trials? >How might we increase the influence of women living with breast cancer, >in >all aspects of decision-making about the disease? >What guidelines are needed for corporate funding of breast cancer groups? >How can a breast cancer coalition effectively influence health policy? >How might the media help a coalition to influence public policy? >How is cancer research currently organized and funded in Canada? >Who are the breast cancer charities and organizations, and what are they >doing? >How can a Canadian breast cancer coalition contribute to a research >agenda? >Why are there differences in breast cancer treatment and survival? >Do Canadian and U.S. women receive different treatments? >Should there be a cancer coalition or a breast cancer specific coalition? >What should the government of Canada be doing about breast cancer? > >For more information, send email to odon@cam.org, or visit the WWW page >at >www.cam.org/~odon/breastcaadv > ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***
>I am writing on behalf of a previous employee, whose 50 year old Russian >mother in law has been treated with chemotherapy for breast cancer >following a badly botched operation in a Russian hospital. > >The mother in law is suffering a relapse, they believe, signaled by >fluid retention in the legs and lower body. Although the Russian >physicains have suggested investigative surgery, cat scans being >non-existant in that area, they do not think that anything positive can >come of treatment there. > >The outstanding costs of the mother in law's previous treatment are >$60,000, and, although they feel they can cover that by selling their >home, I personally doubt that they will be able to deal with the >expenses of further treatment. > >I am therefor looking on their behalf for a solution either in this >country or in Europe. Is there a chance for some of this woman's >treatment to be taken over by some non profit group? Is there a location >in Russia, where she can be seen and appropriately treated by competent >physicians? Any suggestions or leads you can provide will be greatly >appreciated. > >Jo Lynne Lockley ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-*** Hello Jo Lynne Lockley, I'm afraid I can't offer much advice. We could put part of your e-mail on our Feedback page and perhaps others would contact you directly. Would that be OK? I will look at Europa Donna's membership list, but I doubt Russia is included. Europa Donna is on our contacts pages, a pan-European organisation concerned with breast cancer. >Is there a chance for some of this woman's treatment to be taken over by some >>non profit group? One thought, have you tried contacting any US drug companies? I was told that Bristol Squibb (HQ outside Princeton, I think) have a patient programme through which they provide free chemo drugs to people of low income, including outside the US. Perhaps they offer other treatment options or can make suggestions. >Is there a location in Russia, where she can be seen and appropriately treated >>by competent physicians? I am not able to advise you on this. Have you tried any of theinternational medical/aid organisations like the Red Cross or Medicins sans Frontieres? I will get back to you about Europa Donna. Regards, Marie ***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-***-*** >>I'm afraid I can't offer much advice. We could put part of your e-mail on >>our Feedback page and perhaps others would contact you directly. Would that >>be OK? >Yes, that would be excellent. I will tell Ed and Julie (the employee and his >wife) about the programs you mention, as well... At this point they are not in a >position to go out and fight systems or research options. Information such >as yours is therefor greatly appreciated. > >Thank you very much, > >Jo Lynne Lockley
>>>Dear Marie Nally >>>from Rosy Martin >>> >>>Thank you for getting in touch with me about your project. It sounds >>>excellent. I have not had the opportunity to view it yet, unfortunately. I >>>am on a working trip in Canada, but I do not have easy access to a computer >>>or the internet. (Today, Oct 1 is the first time I have been able to access >>>a computer since I have been away. Yes, I know electronics are wonderful, >>>but when one is in transit it is much more difficult). As soon as I can, I >>>will look at it. However, I defiantely would like to comment and give full >>>feedback. This I will most easily be able to do when I am back in London >>>(beginning of Nov). I will make every effort I can to see it as soon as >>>possible. Are you intending it to be part of your site permanently, or just >>>for the month of Oct? Are you asking me for feedback now, because you will >>>not have time to work on it afterwards? >>> >>>I do really appreciate you contacting me and will respond more fully after >>>I have viewed the site. >>> >>>Best wishes >>> >>>Rosy Martin >>>
>TO: Marie Nally or Nina Pope, > > Dear Ladies, > > I am Sergeant Johnston, NCOIC of the Community Health Nursing Section of >Womack Army Medical Center, Ft. Bragg, NC. I found your Web page on Three >Easy Steps to Breast Self-Examination and thought it was very concise, >accurate, and to the point. > My section is starting a new Breast Cancer prevention program and your >page would make an excellent flier for us. Would it be possible to get >permission to reproduce this page to be used as a handout to our customers? > You can respond via E-mail. I'm looking forward to >hearing from you. Thank you. > > Dale W. >Johnston > SGT, USA > NCOIC, >Army Community Health >Hi Dale, > > As far as we are concerned you are welcome to download our BSE page and >reproduce. We took the graphics and text from a card produced and circulated >by Estee Lauder (UK) which does not specify the artist or author. > >Never thought we'd be of service to the US army. Consider it returning a >favour, as a US army nurse recently gave me my Lentaron injection when I was >in Zagreb on an aid convoy to Bosnia. > >Regards, > >Marie
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