Date: Mon, 22 Sep 1997 15:35:18 -0400
From: Alison
Subject: Please Join Us - Breast Cancer Awareness Month

Please Join Us for an Important Online Event

"Wear the Pink Ribbon for Women on Your Web Page"
Sponsored by Avon's Breast Cancer Awareness Crusade

Please join us for a global link campaign on the World Wide Web to show
your support for the breast cancer cause during the month of October,
National Breast Cancer Awareness Month.  Here's how you can participate
in Avon's "Wear the Pink Ribbon for Women on Your Web Page," sponsored by
Avon's Breast Cancer Awareness Crusade.

"How"
To join this online show of solidarity for the breast cancer cause, go
directly to http://www.avoncrusade.com/links/index.html.  Once you are
there, follow the instructions on that page to place the pink ribbon
graphic and link onto your homepage so you can "Wear the Pink Ribbon for
Women."

"When"
October 1 - 31, 1997, National Breast Cancer Awareness Month

Thank you for Joining Avon's Breast Cancer Awareness Crusade in posting
the Pink Ribbon Online!  And please make sure to email us at
AvonHost@aol.com with the URL of your homepage where you've placed the 
pink ribbon so we can
link back to you on our Special Thanks page.

Avon's Breast Cancer Awareness Crusade is the largest corporate
supporter of nonprofit breast health programs in America, with over 
250 programs funded in 48 states and Puerto Rico.

To: Alison

>Please Join Us for an Important Online Event

I have put your e-mail on our Feedback page.

We always have a pink ribbon on our webpage and we advocate breast cancer 
awareness thoughout the year. Our web site is run voluntarily on free webspace
provided by Easynet. We would be happy for you to link to us. What can you tell 
me about any financial support Avon provides for breast cancer causes in the UK?

best wishes,

Marie
http://www.easynet.co.uk/aware/

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Delivered-To: UKBCA@somewhere.org.uk
Date: Mon, 22 Sep 1997 23:51:11 -0700
From: SUSAN GRAY 
Dear Marie and Nina,

The Quiltart homepage has just put up a page about my breast cancer 
names quilt, Raging Light.  I am in the process of expanding the project 
with 2 new quilts and would love to have some input from the UK.  Please 
check out the page at http://www.his.com/~judy/ragingl1.html and let me 
know what you think.  Is there anyplace on your site that a link to this 
page could be added?  If not, do you have any suggestions for other ways 
I can share the information with folks in the UK?  

Looking forward to hearing from you!

Hugs,
Susan Gray
PS - Your website is beautiful!  You've done a lovely job designing it!

Hello Susan,

>Is there anyplace on your site that a link to this 
>page could be added?  

I'll put your message on our Feedback page. And take a look myself when 
I get a chance.

>PS - Your website is beautiful!  You've done a lovely job designing it!

Thanks. The design credit goes to Nina.

best wishes,

Marie

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

Delivered-To: UKBCA@somewhere.org.uk
From: "John Sweeney" 
Subject: Weblink
Date: Fri, 19 Sep 1997 14:15:52 +0100

Hi,
Congrats on a good looking site I thought you might like to include a link
to my own Palliative Page at
http://dspace.dial.pipex.com/jjsweeney
and if i can work out how to do it I'll have a pink ribbon on the page
throughout October
Cheers
John

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

Hi John,

>Congrats on a good looking site

Thanks.

> I thought you might like to include a link
>to my own Palliative Page at
>http://dspace.dial.pipex.com/jjsweeney

Just had a quick look - fresh and human. Interesting to see the hospice 
links. I like the forward and back arrows, the captions give a feel of the whole 
site and where you are in it. 

I find the word "palliative" depressing (speaking as a woman who has had 
secondary breast cancer for 3 years) but I know that is the professional 
parlance. As a former resident of Scotland I am glad to see the Scottish links.

One minor suggestion, the file names which come up as the Title in Netscape 
e.g. aug1 etc - why not give these pages proper titles? Otherwise they bookmark 
as aug1 etc and then I for one can't remember what the site is about.

Re books - have you read "Love's Work" by Gillian Rose? Reviewed on our site 
and a personal favourite.

>and if i can work out how to do it I'll have a pink ribbon on the page
>throughout October

There was a "pink ribbon" web page last year which had downloadable 
images but I don't have the URL now. You could download our title gif and 
crop the ribbon from that.

Do you know about/belong to uk-onc-web? If not, I can forward info.

best wishes,

Marie

Delivered-To: UKBCA@somewhere.org.uk
From: "John Sweeney" 
To: 

Hi
Thanks for getting back to me and thanks for the comments, I've been going
to rename the pages but the original names were there because they were
done in August and helped me keep track of them amongst my untidy files.
Your comment about the title, palliative is interesting and the first time
anyone has said that; I like the word because thats what I have almost
always worked in and I still think it is a term that needs a bit more of a
profile, particularly outsidethe nursing / medical world. Point taken
though.
Uk-onc-web sounds interesting, as I have never heard of it, I would
appreciate it if you could send me info about it, thanks
Cheers
John

To: 
From: m.nally@dial.pipex.com (Marie Nally)
Subject: cancer web info

Hi John,

>Your comment about the title, palliative is interesting and the first time
>anyone has said that

Several others in my support group for women with 2ndary breast cancer have 
said this, though I don't think most of us are 'normal patients.' It's a gut reaction 
for me. Palliative sounds like "pat-on-the-head" and "placebo" and I think of it 
as pain relief when there is nothing else left. I've noticed that some people also 
seem to shrink from the word 'hospice' and when the Macmillan nurse is attached 
to the hospice rather than some other unit, initiating contact seems more awkward. 

>Uk-onc-web sounds interesting, as I have never heard of it, I would
>appreciate it if you could send me info about it, thanks

OK. fwding separately. This is an e-mail discussion group which has recently formed 
for those who make cancer-related web pages in the UK. There hasn't been much 
traffic and you can easily read all the archives. The group is meeting on 26th Sept 
in London and perhaps this will give it momentum.

Re linking to your site. I will mention your site in our Diary and put your e-mail 
on our Feedback page. Neither may happen until Nov. We try to keep our Hotlist 
short and annotated (mostly breast cancer-specific or UK cancer specific) 
because we find long lists of links off-putting.

best wishes,

Marie

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

Delivered-To: UKBCA@somewhere.org.uk
Date: Thu, 18 Sep 97 19:41:46 0000
From: Marina  
Subject: URGENT/How to order a book
X-URL: http://www.easynet.co.uk/aware/book/reviews/selfhelp.htm

I would like to buy the "The Cancerlink Directory of Cancer - Support 
and Self Help, 1997". My name is Marina and I work for a social 
research institute based in Rome, called CERFE, which is carrying out a 
research on citizen's associations and support groups for breast cancer 
patients. Could you please be so kind to tell me how can I order the 
book? I would like, also, to receive it in a few days, so I need a 
delivery through a fast mail service (DHL or UPS, for instance). Would 
it be possible for you to organize this delivery, of course at my 
espenses? I can send you my American Express card numbers. (Do you 
accept credit cards, or what other kind of payment do you accept?).

Thank you very much in advance!

Marina

To: Marina 
Subject: Re: URGENT/How to order a book

Hi Marina,

>I would like to buy the "The Cancerlink Directory of Cancer - Support 
>and Self Help, 1997". 

I think it is free. Try e-mailing Cancerlink at

cancerlink@canlink.demon.co.uk

if you don't get a quick enough response, come back to me with your address. I'll send 
you my copy and get another one.

best wishes,
Marie

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

Date: Mon, 15 Sep 1997 18:32:39 -0700
To: site owner:
From: heidi

In an effort to improve breast cancer care, and in support of the breast
cancer awareness efforts worldwide, the Sapient Health Network (SHN) is
sponsoring a breast cancer petition called the Breast Cancer Care Petition
Drive from now until the end of October.

SHN is offering information on the petition by posting the bill on their
site, which visitors can read and sign online (http://breastcare.shn.net/).
 As a breast cancer awareness site, you can help support the effort by
adding the button to your site so that your audience can participate. 

SHN is a health community offering support and medical information on
women's health concerns (http://women.shn.net), including breast cancer,
uterine fibroids, endometriosis, ovarian cancer, chronic pelvic pain,
irregular/heavy bleeding, and incontinence.  Whether you're looking to find
the latest medical information on your symptoms, or a place to meet and
chat with experts and other women, SHN offers a personalized information
based on your profile of symptoms.   

Please let me know if you can help support this educational effort by
providing a link to the breast cancer url above.  I have also attached an
awareness icon that we would encourage all participants to use.  Please let
me know if you have any questions about SHN or its breast cancer petition.

Thanks in advance,

Heidi Paul

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

Date: Tue, 9 Sep 1997 02:34:27 -0400 (EDT)
From: CM
To: UKBCA@somewhere.org.uk
Subject: Breast Cancer

My lady friend is suffering from this disease.  

She has 'DUCT CELL CARCINOMA'.

I should be grateful if you would elaborate on this and explain me what this
really is.

Thank you

Chaney

To: CM
From: m.nally@dial.pipex.com (Marie Nally)

Hello Chaney,

We are not able to offer medical advice or information from our web site. If you are 
in the UK I suggest you contact:

support@bccare.demon.co.uk

Otherwise, some of the sites (e.g. Oncolink) which you can reach via our Hotlist offer 
on-line info and/or you can e-mail for medical info:

http://www.easynet.co.uk/aware/links/index.htm

Best wishes to you an your friend.

Marie

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

Date: Mon, 08 Sep 1997 11:56:14 +0000
From: N Gould 
Organization: Imperial Cancer Research Fund
To: UKBCA@somewhere.org.uk
Subject: 
X-Url: http://www.easynet.co.uk/aware/

To:   Marie Nally, Nina Pope
From:   Natasha Gould
 Public Relations Executive
 Communications Department
 Imperial Cancer Research Fund

Re:                     UK Breast Cancer Campaign Web Site

I would be grateful if somebody could contact me regarding the above 
site.

We are one of the largest cancer research organisations in the world 
and are heavily involved with breast cancer issues.  Imperial Cancer 
Research Fund have always played a large part in national breast 
cancer campaigns and therefore feel it would be of great benefit to 
both our parties if ICRF were included in this site.

I would appreciate the opportunity to discuss this matter further and 
am available either via EMail or phone.

I look forward to hearing from you.

To: N.Gould@icrf.icnet.uk
From: m.nally@dial.pipex.com (Marie Nally)
Subject: Re: 

Hello Natasha,

>Re:                     UK Breast Cancer Campaign Web Site

>We are one of the largest cancer research organisations in the world 
>and are heavily involved with breast cancer issues.  Imperial Cancer 
>Research Fund have always played a large part in national breast 
>cancer campaigns and therefore feel it would be of great benefit to 
>both our parties if ICRF were included in this site.

We did have some e-mail correspondence with ICRF when our site was
 first on-line but I do not have access to the account where that mail 
is stored at present, so I cannot tell you who responded. We were linked 
to ICRF's site for a while from our Hotlist page. As I recall, at that time 
ICRF's site contained info about job opps at ICRF and such like and did not 
give much detail about current/past research or offer to supply information 
to those affected by cancer. Now we are linked to a number of sites which 
are in turn linked to the ICRF site. I have not looked at ICRF's site recently, 
will do so asap.

As you can see, we generally include organisations which provide support 
and information for those affected by breast cancer in our Cancer Contacts 
list. We do include breast cancer-specific research/funding charities 
(ABC, Breast Cancer Campaign, BREAKTHROUGH). Did you want us to link 
directly to your site from our Cancer Contacts list or did you want to 
provide us with information for us to make an ICRF page on our site 
(+/? link to your site)? Either should be possible. Let me know what you had 
in mind.

Regards,

Marie

Date: Tue, 09 Sep 1997 12:04:09 +0100
From: Rod Nicolson 
Organization: Imperial Cancer Research Fund

Hi Marie,

Natasha has forwarded your mail on to me.  We now have a slightly more
comprehensive collection of links and you'll find Aware here

        http://www.icnet.uk/lis/cancer/index.html

under "Specific Cancers".

As regards you linking to us, just a straight link to
http://www.icnet.uk/ will be fine.  

Looking forward to meeting you on the 26th.

Rod

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


Date: Thu, 28 Aug 1997 15:13:05 -0400 (EDT)
To: UKBCA@somewhere.org.uk
Subject: breast cancer

Hi there
I have a friend who has undergone several weeks of chemotherapy to treat her
breast cancer. She now has to take valium to get herself to hospital for
treatment as the whole thing has freaked her out so badly. Her consultant
wants her to have radiotherapy almost immediately - with no test to find out
if the cancer is still in her system. She has refused as is her right and im
trying to find out as much as i can about alternative therapies. Your help
and advise and guidance would be greatly appretiated. 

thanks for your time

ricky

To: ricky
Subject: Re: breast cancer

Hi Ricky,

>I have a friend who has undergone several weeks of chemotherapy to treat her
>breast cancer. She now has to take valium to get herself to hospital for
>treatment as the whole thing has freaked her out so badly. Her consultant
>wants her to have radiotherapy almost immediately - with no test to find out
>if the cancer is still in her system. She has refused as is her right and im
>trying to find out as much as i can about alternative therapies. Your help
>and advise and guidance would be greatly appretiated. 

First, let me say that I am responding with my personal view based on my own 
experience as a cancer patient, so my reply will not be authoritative or exhaustive.

In terms of coping with the consultant/hospital, your friend should find out if 
there is a breast care nurse or other counsellor or patient advocate at the 
hospital. Having someone else present to take in information and ask questions 
helps take the pressure off. Where I am a patient, the counsellor also has access 
to info on complementary care. If there is no such support available where your 
friend is treated, at least having a friend present at appts who is aware of her 
concerns would help (sorry if this seems obvious).

I am not all that familiar with alternative medicine resources on the net. The 
University of Texas Center for Alternative Medicine Research in Cancer Home Page

http://chprd.sph.uth.tmc.edu/utcam/

includes "Alternative Medicine Resources" for cancer with further Internet links: 

http://chprd.sph.uth.tmc.edu/utcam/resource.htm

If your friend lives in the UK, the place most often mentioned in relation to 
complementary care is the Bristol Cancer Help Centre. There is some info on 
our site.

http://www easynet.co.aware/contacts/help/index.htm

There are other centres, depending on where your friend lives. Also the Cancerlink 
directory has info on local support groups and these might be a source of local 
alternative/complementary care info. I have a copy and can give you details of 
groups in a specific area if you want.

There is a breast cancer e-mail discussion group. I can provide subscription details 
if you want. I am not a member but I think there is a large volume of mail, most 
originating from the US. This might be a useful place to ask if other patients have 
had experience of a specific treatment.

Has your friend already tackled books on alternative/complementary care? It is 
difficult to make suggestions here without knowing how much research she has done. 
There is one book on our site which might be a good place to start

http://www easynet.co.aware/book/reviews/choices.htm

Choices in Healing - Integrating the Best of Conventional and Complementary 
Approaches to Cancer by Michael Lerner

(despite our reviewer not being too positive).

I hope this information is helpful. Please get back in touch if I can help further. 
I know the volume of information will seem daunting and it will be difficult for 
your friend to evaluate what might be of use to her. 

best wishes,

Marie


>thanks for your help Marie, since your Email my mate has got onto the
>Bristol centre. 

Good.

>but shes doing well - as I hope you are.....

Thanks, I feel well.

>Ive just celebrated 10 yrs
>clear of Hodgkins disease - so theres hope for all of us!!!!

Good to hear it. Take care.

Marie

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

Delivered-To: UKBCA@somewhere.org.uk
Date: Fri, 15 Aug 1997 00:04:53 +1000
From: "Davis'" 
Subject: breast cancer query

dear marie or nina I am 50 years old and presently live in australia at
the age of 47 I was diagnosed with b/cancer I underwent lumpectomy on
right breast radiotherapy and 6 months chemotherapy and have since
luckily enjoyed good health. I am presently taking tamoxifen on a 5 year
basis. My husband & I want to return to U.K next year to live
permanently[we are U.K citizens] but I am somewhat worried as to the
availability of secondary treatment if my cancer should return. We would
probably be living in Norfolk In australia secondary treatment is
swiftly given I have heard good and bad reports about U.K. and would
appreciate some advice on where to search for some concrete information.
I am now on yearly checkups & X.rays and I do have a good G.P. What are
G.P approach to cancer situations at present.
 
J Davis   

To: "Davis'" 
Subject: Re: breast cancer query

Dear J Davis,

Thanks for your e-mail. Please let me stress that I can only offer you my 
opinion based on personal experience and talking with other women with 
breast cancer. I have secondary breast cancer and all of my treatment 
has been in London. After I had primary breast cancer I was followed up 
on a 3 monthly basis initially, then six monthly. I had annual mammograms. 
I have a very supportive GP. 

One useful source of information for getting an overall picture of the cancer 
services in the UK is the National Cancer Alliance's  Directory of Cancer 
Specialists. This gives details of specialist cancer centre and units. 

You can order the book from:

National Cancer Alliance
PO Box 579
Oxford
OX4 1LB

The book costs 5 pounds sterling plus 70 pence postage per copy. (Maybe more 
postage for Australia.)

There is also the Macmillan Directory of UK Services: Raising Standards in 
Breast Cancer Care (1996) which is sent to all UK GPs, it details:

- the staff in the breast cancer team, how they work together  and how many 
new patients they see each year (to meet the latest DOH guidelines, units should 
be seeing at least 100 new breast cancer patients per annum to be specialists).

- whether they offer triple assessment (clinical examination, breast x-ray and 
microscopic examination of tissue) at first visit or how long patients have to 
wait for test results.

- what technology and back up facilities are available for diagnosis, treatment 
and care.

Patients will be able to access the Directory by asking their GP or via the NHS 
Information Service (0 800 665544).

You can also e-mail 

Breast Cancer Care (support@bccare.demon.co.uk) and 
Cancerlink  (cancerlink@canlink.demon.co.uk), 

charities which offer support and information. I can also put your e-mail on our 
Feedback page and if anyone contacts us from Norfolk I can pass the message to 
you.

The Directory of Cancer Support and Self Help published by Cancerlink includes 
8 cancer support groups in Norfolk, including the Norwich Volunteer Network of 
Breast Cancer Care. I can send you contact addresses if you like - do you know 
where you will be in Norfolk?

I hope this helps. Please let me know how you get on and if I can offer any other info.

best wishes, Marie

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

To: m.nally@dial.pipex.com
From: "percival"
Subject: Marketing material
Date: Fri, 08 Aug 97 19:05:26 PDT

Dear Ladies,

Re: D P medical centre , Bedford

We are hoping to take part in the Estee Lauder campaign in October, do =
you have any market literature
 to support our efforts ?

best regs

Shelagh Percival

To: "percival" 
Subject: Re: Marketing material

Hello Shelagh,

>We are hoping to take part in the Estee Lauder campaign in October, do =
>you have any market literature
> to support our efforts ?

We do not produce any literature. Last year we put a press release about our site in the Estee 
Lauder press pack, which otherwise consisted of details about Estee Lauder's support of
 breast cancer awareness. There was no co-ordinated press pack produced by any of the cancer
 charities/voluntary organisations regarding Breast Cancer Awareness Month. Each of the 
organisations produces its own press releases and literature.

We will be including all the information we receive on activities in October in the Diary page 
on our site.

If you want printed material for awareness-raising purposes, I would suggest you contact 
Breast Cancer Care and ask for any free literature and a list of their publications for which 
they charge. The Women's Nationwide Cancer Control Campaign also produce posters and 
leaflets on breast self-examination and screening. There are a number of the other national 
organisations which are listed on our Cancer Contacts page and provide literature. Sorry not
to be of more help. I wish that there was more of united effort in October. We do what we can 
but we do it all on-line.

Regards,

Marie