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Touchlines March 2013 .pdf



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Touchlines
The Newsletter of Cancer Support France — Association N° W163000037
Patron: Prof. Alain Daban: parrainée par le Professeur Alain Daban, professeur émérite de la faculté de
médecine de Poitiers" et "président d'honneur du Réseau Onco-Poitou-Charentes

Volume 9 Issue 2

March 2013

In this issue

“I didn’t come to
France …”
Facing up to the
truth about life
before death

Notes from the President’s desk …

P. 2

P. 2

Around the
Regions

P. 3-5

Specialist cancer
websites

P. 5

How life can change P. 6
so quickly
The Bookshelf
… and finally

P. 7

Useful information

P. 8

We have had a fairly quiet period at National Office – ticking over
nicely you might say. There have been several extra large print runs – the
printer is certainly earning its keep thanks to requests for leaflets and
posters from several areas. We were also busy supplying Christmas
cards. Apologies for the spelling error on the inside which will be
corrected for next year! We now have a nice range of general purpose
cards and some Easter cards. Pricing has stayed constant for quite a
while but please note that prices will need to rise shortly to meet the
increased cost of paper and inks.
New Teams - It has been a real joy to see the development of a
new team in the Tarn area. The group, supported by Sud de France, is in
the process of registering and will be known as CSF-Midi-Pyrenees. We
wish David and the team every success and look forward to meeting
them in due course.
The Paris development continues slowly. Like all large cities,
people are generally working, and so recruiting is slow. In addition to
this, there are many associations, all competing for members!
Nevertheless, Marie-Pierre and Mary-Lisa are doing an excellent job in
promoting the organisation. Three clients are already being supported.
Please spread the word about CSF if you have contacts in Paris. We
would be delighted to have volunteers come forward. As clients from
other areas are sometimes sent to Paris for consultations or treatment,
we do need to support this development if we are going to be able to
sustain increasing requests for client support.

AGM notes - The AGM is rapidly approaching – March 21st, here in Benest. Several of you have already
indicated your intention to come, and I really do look forward to seeing you. This annual meeting helps to
provide a sense of unity and common purpose, as well as cementing old friendships and making new ones. It
is also when you elect your new National Committee. If you have not had a representative on the committee
before, why not consider proposing someone? Help us keep the national picture in view and ensure that we
meet everyone’s needs.
Unfortunately, I have had no confirmation from Marc Keller (La Ligue National contre Le Cancer) so his
proposed presentation on patient rights and how to access them may well not happen this time. We will,
however, have the opportunity to discuss creative ways of using surplus funds in the support of our clients
and their families. I know this is an issue of concern for many of you so do put your thinking caps on and
come prepared to share your suggestions. Buying equipment for hospitals from funds donated to CSF for
support work is NOT an option, as it does not fall within our statutes.
(continued …)
Imprimé par nos soins

Paperwork will be sent out 15 days before the (appropriately called GoToMeeting®), which provides a
meeting. Please ensure that you return your voting marked improvement on our former reliance on
papers swiftly. Remaining dates for your information: Skype®.
5th March Convocations posted to associations
15th March all postal voting papers returned
21st March AGM
Traffic warning - I need to give you a heads up
on accessing Benest! We are now in the midst of road
works, as the long awaited refurbishment of the village
roads and pavements progresses. So any visit to the
National Office may take you a little longer! At this
point in time I do not know which roads will be closed
and which routes the diversions will point you
towards. Hopefully the area around the Mairie will be
nearing completion. Everyone booked in to the
meeting will be informed by email as soon as I know
the full picture. I will endeavour to provide sketchmaps with the diversions detailed.
Lunch - The Bar Restaurant is now open with
new owners in place. Neil and Jeanette look forward
to welcoming us for lunch on March 21st. We are
planning a menu to include a starter, a chicken main
and a desert, cheese and coffee. This will be priced at
11,50€. Drinks will not be included. Reservations need
to be made directly with Neil and Jeanette by Friday
March 15th. A business card will be sent out to you
with the AGM mailing. Tel: 05 45 30 74 48 and find full
details on their Facebook page:
https://www.facebook.com/lacharrette16350
Accommodation - For those of you coming
from further afield, and needing Bed and Breakfast
accommodation, you will find a great welcome at La
Ribières in Confolens – 20 minutes away from Benest.
Contact Diana Brown on: 05 45 30 74 48 Website:
lesribierescharentebnb.iowers.net

With our National Committee meetings
involving members from all over the country, our
previous arrangements have just not been up to the
task. The new facility, moreover, is available to all
Associations since it is an ‘organisation-based’
package. We have now moved on from the ‘trial
version’ to the full programme, and the first year’s
subscription has been generously funded by CSF
Dordogne Sud. The operational details are available
from the National Office. Needless to say, only one
meeting can be held at a time, and this needs to be
scheduled by the person ‘calling’ the meeting (by
reference to the bookings calendar), who also invites
attendees. At the appropriate time, the organiser
initiates the meeting, and the others then join it.
Unlike Skype®, the conference includes video,
can be easily recorded, and will cope (we are told –
we’ve not tried it yet) with up to 25 participants.
Sound quality is very good. We hope that this new
national resource will be of particular help to those
Associations whose members are geographically
dispersed. Needless to say, its’ use is not restricted to
committee meetings – it may equally well be used for
trainers or treasurers to communicate on a regional or
national basis.
Andy Shepherd - National Committee

“Facing up to the truth about life before death”
The following link is to an article recently
published in The Irish Times written by Bridget
Megarry following her terminal diagnosis from blood
cancer. This article is about her journey so far and she
lists the 10 tips she is working with to make her life
bearable and talks about the taboo subject of facing
up to our mortality.

Well I think that brings you up to speed, trust you have
Bridget, a friend of one of our volunteers,
kept your feet dry ! With every good wish,
writes with honesty and integrity, telling it like it is.
This is a very impressive piece of writing on what is
Linda Shepherd such a difficult subject for all of us; so much is said in
such a short piece that the reader cannot help but
I didn’t come to France to ...
examine how they might handle their own mortality
when the time comes.
… go to meetings! I have lost track of the
number of times I have used that phrase in the past 11
Ed.
years but for all CSF members who share my feelings,
there is good news. As mentioned briefly in the last http://www.irishtimes.com/newspaper/health/2013/0
issue of Touchlines, CSF has now invested in a 129/1224329389735.html
professional
internet
conferencing
package
Page 2

Touchlines

Around the Regions
Bordeaux and Region
We in the Bordeaux Association find ourselves
moving slower than anticipated as life seems to get in
the way but we continue to chip away at promoting
our organisation, training our Active Listeners,
recruiting members and, of course, fundraising. As we
approach our one year anniversary, we continue to be
enthusiastic and energetic. As President, I wanted to
share an experience I had that made me proud to be
part of such a wonderful organisation.
I was fortunate enough to be invited by one of
our members to attend a panel discussion sponsored
by the Fondation Bergonié here in Bordeaux in honour
of World Cancer Day on February 4th. The discussion
was entitled, ‘La Vie Après La Maladie.’ Four survivors,
two men and two women, discussed their experiences
with their diagnoses, treatments, and, most
importantly to the topic of the night, their life after
cancer. It was an inspirational discussion that sought
to remind the audience which included Bordeaux
Mayor, Alain Juppé, that cancer is not necessarily or
always a death sentence, that French medicine is just
beginning to re-look at the disease and its treatment
through an interdisciplinary lens, and that survivors in
France need access to support services to help them
adjust, both emotionally, socially, and physically, back
into their lives once their treatment has ended. In a
room full of survivors, caregivers, medical
professionals, and the Maire, I was in awe of how much
energy there was in the room to promote change.
However, I was also acutely aware of how much work
there is to do to change how the French medical and
social culture deals with disease. I had the privilege of
speaking with three of the presenters and sharing with
them, briefly, the mission and history of CSF and was
quite well received. We here in Bordeaux hope to be
able to invite them to speak to our members in the
future about their experiences and their work.
For those of you who like to read in French,
two of the speakers have written books about their
experiences that I have just picked up at the local
bookstore. Pierre Tillement, a chiropractor by training
wrote: ‘Un medecin face au cancer’ which journals his
initial diagnosis and treatment with T-cell lymphoma.
He followed this memoir with a sequel about his life in
remission: ‘Une seconde chance: Quelle vie après le
cancer?’ Both books are available through Amazon.fr.
Also, Dr. Marie-Paule Quintanilla, a retired OB/GYN,
has written a memoir about her experience as a
Volume 9 Issue 2

patient with breast cancer, entitled; ‘Quand le jasmin
refleurira’ which is available through www.mollat.com
with precedes benefiting Le Comité Gironde.
Marisa Raymond

Charente Plus
The main focus for Charente Plus has been
raising the profile in the Charente Maritime. Joan and
Lynne aided by Andrew and Viv have been very busy
and very successful. The bureau recently met with
Richard and Gywneth, two enthusiastic volunteers
from the Charente Maritime to discuss the implications
of becoming affiliated to CSF. We offered the same
guidance as we did for the Haute Vienne. There has
been another meeting recently in the Charente
Maritime with around 20 interested parties, some of
whom are already members of Charente Plus. Viv
would do all the Active Listener training and follow-up
days until Charente Plus and the Charente Maritime
were happy to proceed under their own steam.
Affiliation is down the line, but the bureau is confident
there is genuine interest and enthusiasm to take the
next steps.
Our AGM on the 5th February, saw Joan Hogan
elected as president, with Lynne Rees as vice president
and Kate Britten as secretary. Viv, Andrew and Anne
remain in their current roles. Joan has been vice
president since May of last year and will bring new
ideas and renewed vigour to the table. I wish them all
a very happy working life together. So, after 4 years as
President does it feel funny not to be president? I have
some ideas of how I’m going to spend my extra
available time but I’m sure I’ll be just like every other
retired person who thought they would have lots of
free time! I was guest of honour at a lunch, presented
with flowers and gifts from the members and
surrounded by some very good friends. Yes, I’ll miss
some of it of course but I’ll catch up with old friends at
events and continue to socialise with those that will
have me. Thank you to all that contributed to my
leaving presents. They are beautiful and I love them.
Pat Hyatt

Pat leaving
Charente Plus

Page 3

Pat at her leaving do
with some of
her lovely gifts

Marché de Noël at Le Chapeau Melon, by very kind
invitation of our stalwart supporters Sandra, Brian and
Alun. Doors opened at 09.30am and the market was
soon buzzing with customers. A huge selection of
goodies was on offer, including local wines, delicacies,
clothing, handmade jewellery to name but a few.

We were thrilled to see so many of our
supporters, many of whom stayed and enjoyed the
festive lunch. The arrival of Santa Claus was well
received and gifts were distributed to all the children
New contact details for Joan are listed on the present and some adults too!
Useful Information page. Ed
A joint tombola was organised by CSF and
Jumellage, raising funds which were shared jointly. The
CSF—Deux Sèvres
Jumellage share of these funds will go to help 5
families living in and around Souillac, in particular, it
We held our Annual General Meeting on the 29th will enable the children to enjoy a holiday in 2013.
January 2013 at the Salle des Fêtes St Germier. Only
one member of our team was missing due to taking a
Our thanks go to Le Chapeau Melon once again
well earned holiday with her husband. We welcomed 4 for opening their doors to us and to all who helped and
new members to our group and I am sure they will be a came along to make the day fun and successful.
great help to us with their varying skills.
Thanks - 2012 saw the departure of 2 of our
President, Vice President and Secretary were founding committee members. Susanne and Malcolm
all unanimously re-elected for a further year: Byrne had been volunteers from almost day one of our
branch; both were Active Listeners and each took on
President:
June Searchfield
the separate roles of Treasurer and Vice President. Our
Vice-President: Denise Langford
huge thanks to them both and long may they enjoy
Secretary:
Carol Andrews
continued retirement in the Lot.
Due to the untimely and sad death of Keith
Congratulations - Our congratulations go to
Andrews we had a vacancy for a new Treasurer. Judith member and active listener Averil McManus and
Lord was proposed by the Vice-President and seconded husband Edmond, upon arrival of twin grandby the President and duly elected. Keith will be a hard daughters, a very, very ‘special’ event.
act to follow but I am confident that Judith will fulfill
Two more little girls arrived just in time for
her duties with the enthusiasm and care she has shown Christmas in the Moorhead household too ! Raisin and
for the past few years since joining us. She is a very Truffe, these little black lab puppies could almost have
valuable member of our group.
been delivered by Santa. Christmas was a very different
event this year for Heather and Mike, who are
The AGM closed at 12.30pm and was followed presently improving their dog handling skills alongside
with a super Buffet lunch provided by all the team the river Lot. Could life be any better for all 4 of them!
members.
We now look forward to another positive 2013.
June Searchfield

CSF Dordogne East & Lot

Heather and Mike’s
special delivery
aged 9 weeks.
Raisin in the purple
collar and Truffe in
the orange one

Marché de Noël, Souillac - Sunday 9th December
2012 saw the 2nd joint event of 2012 with Association
de Jumellage, Souillac. In 2011 we held our first
Page 4

Touchlines

Our objectives in 2013 are to ensure our contact
details are displayed in relevant hospital departments, good’ actions. To this end we have set up a subcabinet de medicine, dentists and similar health committee to look carefully at the issue in depth.
practices.
We will, as usual, have publicity and card sales
Julia Hall
at the Breuilh Troc aux Plantes on Sunday 21st Apr; this
2013 AGM - Our latest AGM was held on now, very popular event, is held twice a year. Why not
January 31st with one of the best attendances we’ve bring some plants and/or seeds and swap freely with
had in a long time. Julia was unanimously re-elected as others, a real no-cost option to expand your plant
President with Heather Moorhead as Vice-President collection. Breuilh is close to Vergt.
and there are a couple of new Committee Members.
We look forward to the return of Sue Murphy
Julia is organising more training which, hopefully, after her ‘winter holiday’ in the U.K. The training is
will take place in March this year.
backing up and we have planned to carry out a training
Ed. session for both Riberac and Dordogne East and Lot
CSF Dordogne Sud
starting in Apr. The training will be carried out by Sue,
Jenny Hinchcliffe and myself and we welcome David
After a very quiet period, the last few weeks Brown as a prospective Active Listener for our
has seen a flurry of client activity, including a very sad association; he has already involved himself in a
bereavement within two weeks of contacting us. How number of issues and brings a fresh viewpoint from a
often do we find ourselves wishing we could do more? wealth of relevant experiences.
In our continued effort to spread the word that
we are here for those affected by cancer, we finally
managed to send out 398 individually addressed letters
to all GPs and Oncologists within our notional area of
cover. This has been an on-going project for some time
as gathering all the relevant information, converting it
into a useable format and setting up a mail-merge took
much longer than originally allowed for. My thanks go
to Ivan Langley and Jane Hale for the initial
groundwork and in particular, to Margaret Wells for all
the collating, conversion and subsequent printing.
Both Ivan and I gave several presentations to a
variety of groups last year and I am pleased to say the
requests continue to arrive; I go to Villereal on 18 Feb
to speak to a Well Woman group.

The CSFDS AGM will be held on Monday 8th Apr
at Domaine de la Tour, Bergerac. Formal notification
will be sent out to members closer to the time;
however, it would be nice if you put the date in your
diary now and plan to attend.
Tony Benstead

Specialist Cancer Websites
www.ovarian.org.uk
are focussed on radically improving
the prognosis and quality of life
and treatment options of all
women diagnosed. They believe
that progress will only come
through scientific breakthroughs and by ensuring that
women recognise the signs and symptoms of ovarian
cancer and their work focuses on these areas. They
provide up to date news and links on this subject and
vital information on symptoms, diagnosis and
treatment.

Given the healthy state of our finances it was
agreed at our last conseil meeting that we would have
a member payment holiday this year. We also agreed
that we would have the Angela Clohessy information
such as Death in France, Bereavement etc. printed up
in the same booklet form that we used for our Hospital
www.canceractive.com
Guide. We have already agreed the format and tribute
is an holistic cancer charity
wording with Angela and I have made a good start on
who prefer to be known as
the conversion work. We should have examples for
an
integrative
or
people to see at the National AGM.
integrated cancer charity. This is an information only
website covering news and research from around the
We also agreed to look much more closely at world. Available from here is ICON, the Integrative
how we could ‘add value’ to the support we provide; Cancer and Oncology News magazine.
whether this is in equipment or more tangible ‘feel
Ed.
Volume 9 Issue 2

Page 5

How life can change so quickly…
A few weeks ago, I heard some news about my
oldest and best friend from school from almost 50
years ago. After realising something was not quite
right at the end of December, she had just been
diagnosed with an inoperable brain tumour and was
waiting to have a biopsy to establish how it was
behaving and whether she would be able to receive
some treatment. That, in itself was bad enough but
then a couple of weeks later, another call came
through telling me that there was nothing that could
be done and that her life expectancy was short. She
had a Stage 4, very aggressive Glioblastoma.
Immediately, I knew I had to return to the UK to see
her and hold her and a week later, I was on my way.
Things were going through my mind as to how I
was going to deal with this. Having coped with this
kind of thing before, I was shocked to find how much
harder and more painful this situation was. I thought
that being an Active Listener, I’d be able to cope
but……… how wrong could I have been? I was utterly
devastated and couldn’t stop crying and my Active
Listener duties are in abeyance for the time being.
Walking into her apartment, I was greeted by the
girl I’d always known; bright and laughing and full of
love. But most of all, on that day, she was the happiest
girl alive as the night before, she’d asked her long term
partner to marry her and he said yes!
Aware that talking about her diagnosis over and
over again as she had done since she found out would
be tiring, we kept our conversation to reminiscences
from our years together; school, children, work, music
(she’s a lifelong fan of Paul Young and is friends with
his Tex-Mex band, Los Pacaminos). Eventually, we got
around to talking about her plans which included
getting as many memories together as she could,
revisiting places and just enjoying the time she has left
with family and friends. Imagine how odd it felt then
to be discussing both her wedding and funeral plans in
the same conversation. Not something I’d ever
expected to be doing with anyone!

The Rainbow Rose is a real rose with all the
colours of the rainbow as you’d expect and now it has
become her symbol. They will be in her bouquet when
she marries on February 21st and on her coffin at her
funeral.
Not knowing how long she has (up to 14 months
depending on how her treatment goes), she has
become one of the most positive and inspirational
people I have ever met and her happiness is infectious.
I have no idea how she or anyone who receives
such a diagnosis copes with the knowledge that they
have only a short time with their loved ones. I don’t
know how I would cope but I suppose you find a way.
Many become euphoric and this was evident in the
recent Channel Five documentary, ‘Brain Hospital—
Saving Lives’. Watching that programme helped me
enormously and I found that I could finally understand
where my friend is coming from. Curiously, it’s given
her a new lease of life!
All of her equipment has been given its’ own
name—Camilla Commode, Frankie Frame, Winnie
Wheelchair and the latest arrival, Willie Walking stick
and finally, Maggie the maggot neck rest. (Just a few
alliterations there!!) She has ordered funky facemasks
to keep germs away (hey, this girl has sparkly shower
caps!) and she is adamant that she will be the best
dressed tumour patient in the area.
She has managed to make us all laugh and
accept how it is in this moment and despite our
sadness, we are with her all the way. Knowing that we
will never be in the same space again, there will always
be a permanent place for her in my heart.
Ed.

Her lovely daughter has set up a group on
Facebook called the ‘Rainbow Rose’ group which is for
invited family and friends so that they can post
messages and support and then once or twice a day,
my friend can post one or two messages to all to keep
us up to date with how she is.

Page 6

Touchlines

Calendar of Events
To list your events here, contact the Editor in the usual way at csftouchlines@gmail.com

The Bookshelf
The purpose of this feature is to
identify books that could be useful in
our work. It is not intended as a
review. The Editor may make a small
comment on/identify any that she
owns and has found useful with this
symbol ( ) In this issue, the first two
books are available on Amazon.co.uk
and Amazon.fr and ‘Quand le jasmin
refleurira’ can be found at
www.mollat.com
‘Un medecin face au cancer’
by Pierre Tillement

‘Quand le jasmin refleurira’ by
Dr. Marie-Paule Quintanilla

This is the story of Pierre
A retired obstetrician and gynaecologist from
Tillement
following
his
Bordeaux, Dr Quintanilla presents her memoir of her
diagnosis of stage 4 T-cell
experience as a woman with breast cancer.
Lymphoma in 2003, from the
first symptoms, through 9
months of treatment and
eventually to becoming well
again. It’s a story of the will
to live which has allowed this
As regular readers will see, this issue is a bit
book to be written.
light on regional content due in the main to many
(French language only)
being busy or away. It occurred to me a while ago
that it might be easier for all concerned if Touchlines
became a quarterly publication which would, I
‘Une seconde chance: Quelle imagine, reduce the rush for everyone to prepare
vie après le cancer?’ also by and submit copy and photos every two months. I am
happy to continue with bi-monthly publications but
Pierre Tillement
for that, I will need more copy. I have also found
To approach the delicate
that external contributions can be interesting so if
subject of cancer and
you know anyone, whether they are a client, a carer,
recovery
requires
a
a CSF volunteer or even someone from the medical
knowledge that is deepened
or social profession; maybe they would like to
by having gone through the
contribute. It would also be nice to include articles
illness itself.
Again, M.
from French professionals who work with English
Tillement draws on his own
patients. Please let me know your thoughts which
experience as he lived and
will also be discussed by the National Committee.
felt it as well as the scientific
knowledge that surrounds
Margaret York (Ed.) csftouchlines@gmail.com
this disease.

… and finally

(French language only)
Volume 9 Issue 2

Page 7

Useful information
Association Office & Siége Social
Mairie
Le Bourg
16350 BENEST
Open every Tuesday 10h00—12h30
and by appointment
National Help-line
Télé/fax 05 45 89 30 05
An answerphone service operates outside office hours

E-mail: cancersupportfrance@orange.fr
Website: www.cancersupportfrance.info
Internet Forum: http://csf-forum.org

Useful Contacts
President: Linda Shepherd 05 45 29 08 93
presidentcsf@gmail.com
Treasurer: Richard Ware
05 55 00 31 15
moneybagscsf@frangle.fr
Secretary: Jane Thomas
seccsf16@gmail.com

05 49 48 99 48

Regional Groups
Basse-Normandie (14, 50,61):
Jenny Luck
02 33 60 27 82
jennytluck@hotmail.com
Bordeaux & Region (33)
Marisa Raymond
06 52 67 94 50
bordeaux.csf@gmail.com
Bretagne-Ouest (29 w, 22w):
Judith Curl
02 96 45 76 20
Curl_judith@yahoo.co.uk
Charente-Plus (16, 17, 86,)
Joan Hogan
05 45 38 34 42
csf.charenteplus@gmail.com
Cœur-de-France (03,18, 58):
Teresa Cox
07 70 44 19 96
secretary.csf.cdf@gmail.com
Creuse Plus (23 ):
Until further notice, contact Haute-Vienne
Deux-Sèvres (79):
June Searchfield
05 49 64 59 96
searchfields.lagroie@orange.fr

Page 8

Dordogne Est/Lot (24E, 46):
Julia Hall

09 64 13 66 68

06 35 90 03 41
csfdordognelot@yahoo.com
Helpline

Dordogne-Ribèrac (16s, 24w):
Annora Tiley
05 53 07 46 17
Anntiley66@msn.com
Dordogne-Sud (24, 33, 47):
Tony Benstead
05 53 54 46 67
csf.dordognesud@gmail.com
Gascony (31, 32, 65):
Razia Coleman

05 67 32 18 56
raziacsfgascony@gmail.com

Haute-Vienne (87)
Sue Ware
csfhv@frangle.fr

05 55 00 31 15

Languedoc (12,30,34,48):
Cat Hartley
04 67 96 12 04
csf.languedoc@gmail.com
Lyon (69)
Stacy Diavolitsis
06 40 95 87 71
lyon.csf@gmail.com
Sud-de-France (09, 11, 66):
Hazel Turner
04 68 69 41 45
presidentcsf110966@gmail.com
Vendée (85):
David Martin
02 51 00 92 97
csvpresident@orange.fr

Touchlines
Published in January, March, May, July, September
and November

Copy Date: 10th of preceding month
Items for inclusion should be sent to the Editor:
Margaret York
E-mail: csftouchlines@gmail.com
Please send photographs as separate JPG files,
not embedded in your editorial. Thank you.
Touchlines


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