Date: Thu, 29 May 1997 09:54:17 -0700
From: Claire Pillar 
Reply-To: claire.pillar@nbcc.org.au
Organization: NHMRC National Breast Cancer Centre
To: UKBCA@somewhere.org.uk
Subject: British photography on breast cancer

Dear Colleagues,
I wondered if either of you might know of a British photographer (not Jo
Spence) who had a mastectomy and made a photo-essay autobiography of the
process. Apparently she came to Australia with an installation of her
work a few years ago, but no-one recalls her name. I searched the
British Library catalogue to no avail, so I am not sure if she published
her work. 

P.S. Your page is a great source of information on the British breast 
cancer scene - it's really handy to have the info in one place.


To: claire.pillar@nbcc.org.au
From: m.nally@dial.pipex.com (Marie Nally)

Hi Claire,

>I wondered if either of you might know of a British photographer (not Jo
>Spence) who had a mastectomy and made a photo-essay autobiography of the
>process. 

I don't know who this might be, I don't think I've heard of her. I'll ask around
and see if anyone here might know. I can put your email on our Feedback 
page and visitors to the site  might know. You might also try e-mailing 
Camerawork, the photography gallery/workshop in London that Jo Spence 
was involved with in its early days.

cam@camwork.demon.co.uk

>P.S. Your page is a great source of information on the British breast 
>cancer scene - it's really handy to have the info in one place.

Thanks. I'll get back to you if/when I have any more info.

Regards,

Marie

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Date: Mon, 26 May 1997 16:41:33 -0400 (EDT)
To: UKBCA@somewhere.org.uk
Subject: Breast Cancer Treatment

Do you have any information about the quality of treatment available for
breast Cancer in Birmingham?. My wife has just been diagnosed as having it
and we wish to get her the best treatment. 

We have heard that the  Queen Elizabeth Hospital in Brum is a " Center of
Excellence". Can you confirm this?. 

Thanks for your time.

BBB

To: BBB
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: Breast Cancer Treatment

Hello,

>Do you have any information about the quality of treatment available for
>breast Cancer in Birmingham?.

I'm sorry, I have no direct knowledge of breast cancer treatment in Birmingham 
and don't know any patients there. 

>My wife has just been diagnosed as having it and we wish to get her the best 
>treatment.

I am sorry to hear of your wife's diagnosis and will give you what information I can: 

There are two guides with information on breast cancer treatment of which 
I am aware. "Raising Standards in Breast Cancer Care - the Macmillan Directory 
of Breast Cancer Services in the UK" - see

http://www.easynet.co.uk/aware/book/reviews/raising.htm

I have given aware my copy of this Directory so I can't refer to it for you, 
I'm afraid. Your GP should have or be able to get a copy. There is a also "The 
Directory of Cancer Specialists" which I have not seen. You can order a copy from

National Cancer Alliance
PO Box 579
Oxford
OX4 1LB

Tel. 01865 793566
Fax. 01865 251050

The book costs £5 plus 70 pence postage per copy. 

Have you/your wife contacted Breast Cancer Care, Cancerlink or BACUP? There 
are contact details for each of these organisations on our site and each offers 
telephone advice. Breast Cancer Care and Cancerlink also have email addresses.

support@bccare.demon.co.uk
cancerlink@canlink.demon.co.uk

>We have heard that the  Queen Elizabeth Hospital in Brum is a " Center of
>Excellence". Can you confirm this?. 

I don't know, but the Macmillan Directory would be the best source of info on 
what services are offered at what hospitals in your area.

You might be interested in looking at

http://medweb.bham.ac.uk/cancerhelp/

The site comes from the Institute for Cancer Studies at University of Birmingham 
Medical School. I searched on "Queen Elizabeth Hospital" and "Centre of Excellence" 
without success but the site has some useful general info. I also tried some 
meta-searches on the WWW but didn't come up with anything.

I'm sorry not to be of more help. Please come back to me if you think I can help further.

best wishes to you and your wife,

Marie

------------------------------------------------------

From: STUART J 
To: UKBCA@somewhere.org.uk
Date:          Mon, 19 May 1997 12:47:53 GMT
Subject:       re ; the pink ribbon

 I have been asked by my girlfriend to contact yourselves for your 
advice on where to find certain information. She is currently 
researching the subject of Breast Cancer pressure groups for her 
diploma and would like to find a historical narrative on "the pink 
ribbon" i.e. its origins, how it was launched, and its success.

She would be grateful for any information you can provide, or 
pointers to possible sources.

She has tried to contact yourselves by telephone without success but 
is available on  (phone number)if you have the time.


Thanks for any help you can give

Stuart J (on behalf of G E)


To: Stuart J.
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: re ; the pink ribbon

Hi Stuart,

>She would be grateful for any information you can provide, or 
>pointers to possible sources.

I believe the pink ribbon symbol was adopted first in America, where the campaign 
has had cosmetic and fashion sponsorship. The Avon site might have some information.

http://www.avon.com/about/awareness/frame.html

(Just had a look and didn't see any historical info on ribbon.)

>She has tried to contact yourselves by telephone without success but 
>is available on (phone number), if you have the time.

She might have an old number. I am on (phone number). I am in the process of moving 
but the number will follow me. I will try to call at some point but it might not be 
til the weekend. Would be happy to talk about breast cancer campaigning but I don't 
know any more about the origin of the pink ribbon symbol I'm afraid.

Regards,

Marie

------------------------------------------------------


From: "Susan Sered" 
Subject: help with research
Date: Sun, 11 May 1997 19:47:14 +0300

Dear Friend,

At the World Conference on Breast Cancer Advocacy you may have met either
Dana or Amy who work with me in Israel. 
I have been conducting research in Israel among women with breast cancer.
The focus of the research has been how they feel about the medical system -
whether they are satisfied with the care, the attitude, etc. Many of the
women I have interviewed were especially angry at the Israel "Social
Security" office. The way things work here is that the actual treatment is
done through health plans (similar to a National Health Service).
Afterwards, if women need either help in the house (perhaps because of
lymphodoema) or if they would like to have a chronic problem recognized so
that they can get financial help, they must turn to the Social Security.
The problem is that the Social Security does not seem to know how to relate
to women with breast cancer - the clerks and doctors seem not to understand
that some women who have had breast cancer have long-term or sometimes only
sporadic need for assistance. Each woman who asks for help must submit many
documents to a committee and she must come and be examined by a Social
Security doctor. A letter from her own doctor saying she has medical
problems is not enough, and many women find this "extra" examination to be
insulting and unnecessary. 
I spoke to the head doctor at Social Security and she said that they would
like to help the women, but they have not been able to work out a good
system. Whether or not she is telling the truth - I do not know. But what I
would like to do is give her examples of how these problems are handled
successfully in other countries so that she cannot continue to claim that
there is no solution.

So, this is what I am asking of you. If in your country long-term or
sporadic problems such as lymphdoema or severe damage to muscle tissue are
recognized by your equivalent of Social Security, could you let me know how
they handle it. Are there guidelines so that each woman is not treated as a
special case and sent through a long process of evaluation? 

I would appreciate any information you can send me. 

If you are interested in a one page English summary of the research, I
would be happy to send it to you.

Best Wishes,

Susan Starr Sered


To: "Susan Sered" 
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: help with research

Dear Susan,

>So, this is what I am asking of you. If in your country long-term or
>sporadic problems such as lymphdoema or severe damage to muscle tissue are
>recognized by your equivalent of Social Security, could you let me know how
>they handle it. Are there guidelines so that each woman is not treated as a
>special case and sent through a long process of evaluation? 

As far as I am aware there are no UK Social Security guidelines specifically 
dealing with women with breast cancer, they fall under the general sickness 
benefit and disability rules. I believe the situation is similar to the one you 
describe in Israel.

Breast Cancer Care now have an e-mail address and you might wish to contact 
them for more information on the UK.

support@bccare.demon.co.uk

You could also try Cancerlink

cancerlink@canlink.demon.co.uk

best wishes,

Marie

------------------------------------------------------

Date: Sun, 11 May 1997 20:49:52 -0500
To: UKBCA@somewhere.org.uk
Subject: A question

My name is Naomi and I do have a question about breast exam.  Should I
be alarmed about finding a greenish black fluid coming from my breast? 
My age is 32, the last child I had was 5 years ago.  About 2 months ago
I got off the pill.  No lumps, or discomfort.  I will probably contact
my Dr. Any information would be appreciated.  Respond to e-mail below. 
thank you


From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: A question

Hi Naomi,

>My name is Naomi and I do have a question about breast exam.  Should I
>be alarmed about finding a greenish black fluid coming from my breast? 

If I were you I would consult my Dr about anything unusal such as this. 

Sorry not to be more helpful but Nina and I are not qualified to give medical 
advice. Get this checked out to put your mind at rest. 

Regards,

Marie

------------------------------------------------------

Date: Sun, 30 Mar 1997 15:59:17 +1200
From: Joan
To: UKBCA@somewhere.org.uk
Subject: lymphodema

Dear Marie or Nina,
I have been looking at your Cancer Helpline. I am very interested in
getting any information on lymphodema. I had my right breast removed
two and a half years ago and half my lymph glands removed. I am doing
very well apart from the lymphodema which affects me every day. 
I would appreciate any information you could help me with.
                      Thanking you 
                         yours sincerely
              					 Joan


To: Joan
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: lymphodema

Hello Joan,

I am sorry to be so long in replying, I have been away. I can only provide 
phone numbers and addresses for lympodema support groups in the UK. 
Would these be of any use? I see you are in New Zealand. I have not read 
much more than pamphlets and have not surfed the net for info on this - 
you may be ahead of me. The breast cancer e-mail discussion group might 
also be a place to find useful suggestions. 

Let me know what you've already found and I'll have a surf myself and get 
back to you in May.

Regards, Marie.