Cancer Support France

A team from our Gascony association are making regular visits to patients at the Oncopole cancer research centre / hospital in Toulouse.

Early days

It was during a rendez-vous at Oncopole (a cancer research centre) six or seven years ago that I was thinking of my own experience of cancer treatment and those many ‘chemo days’ when my wonderful professor or one of the medical staff would pop their head into my room and plead that I go and chat to an English-speaking patient down the corridor to try and cheer him or her up which of course, I did, complete with drip in my arm. I pondered why not form a sort of ‘blouses roses‘ team within the Oncopole to help those patients?

And so the Cancer Support France (CSF) visiting team was put into place in 2017, with the help of our President and our Représentante des Usagers (one of the civilian ‘watch-dogs’ at the cancer center, present in French hospitals since 2002). Once the idea was approved by the staff person liaising with associations, appointments were set up by the person responsible for patient / family relations with the head nurses in all of the services. Our President and two Cancer Support France colleagues went together to meet each one, introducing CSF and explaining the project. We were met with great enthusiasm and a first small group of volunteers began making weekly rounds.

How it works

For each visit we call on all the treatment centres / nurse stations asking the nurses on duty whether there are English-speaking patients. On some days, there are merely one or two, on others as many as five or six. Some days are very cheerful, others are heartbreaking. The nurses in each service area have a contact number if our support is needed between weekly visits. We sometimes have to remind people that it is for English-speakers (Anglophones) and not just British people.

A team of two volunteers coordinate the rota and maintain a spreadsheet from weekly volunteer reports to keep track of ‘vital statistics’; how many patients / family members are seen (and who they are), over how long a period, in what service, what support was / is to be provided, and comments. For example, since January 2022, nearly 70 patient visits have taken place.

CSF volunteers making the visits are trained Active Listeners and receive further training for this specific activity from volunteers already on the rota in a buddy system to ‘learn the ropes’. This is invaluable to enable the newbie to become accustomed to the environment and its orientation (Oncopole is an ‘immense ship’). It should be noted, nevertheless, that however good an Active Listener is over the phone, or for accompanying day appointments to the Oncopole, not everyone can cope with a really tough face-to-face visit… and they can be really tough.   As noted, it is nothing to be ashamed of, and I believe this should be pointed out to all Active Listeners before they start visiting. Another interesting thing to note, particularly as our presence is now so well-known at the Toulouse Oncopole, is the number of times we are asked by the medical teams whether we also speak other languages – German, Russian, Georgian, Portuguese, etc. Some of our volunteers do speak languages other than English and French; their skills are welcomed and sought after.

However, it must be stressed that although we offer ‘language suppor’, we are not an official translating or interpretation service – we are not covered legally for such and there is, anyway, one in each hospital. We are there to make sure that patients understand what is going on and to support them and their families as needed.

As an example, a CSF Oncopole visitor was once asked to translate during a telephone call with a doctor in the USA.  The conversation, about a new treatment for a patient, contained a lot of medical terminology. Luckily she was able to call another colleague who is a native French speaker to help out. So, we strongly agree that it should be highlighted that we are not translators; a mistake could cause real problems.

To be able to act as a CSF visitor, it is essential that the volunteer’s French language capability be good enough to converse with the medical teams – good enough to listen to the ‘sous-entendus‘ – and respond in a similar vein when discussing or talking with a patient.

Just sometimes, we come across a ‘new’ medico on the block, who will assume we are there to help merely with the understanding of French, and will sometimes be dismissive of our offer of help, “as the patient speaks good enough/excellent French, and my English is OK”,  so it is necessary to explain our wider support as well.

Visits can be made individually or as a pair with the Buddy system. This has meant that someone not confident in the language can team up with a confident speaker, enabling them to volunteer, and visit. As we have learned over time, the visits can be tough and emotionally draining. Being able to talk together, vent and unload in the car going home or over a coffee afterwards helps a lot to process the emotions.

All of the nursing / care stations have the National CSF leaflets, together with the central telephone number, so they know how to make contact if necessary.

Preparing the future

Time will tell but on a local level, the Toulouse Oncopole draws patients from across Occitanie and beyond, so the potential for action should always be there. More and more Active Listeners are interested in contributing, so more frequent rounds may be envisaged. CSF has definitely become a known player in patient support and has drawn attention to language and cultural needs in patient care.

Some feedback

“First let me thank you for letting us ‘unload’ on you yesterday. It was something of a relief to find an English-speaker to vent [on]”.

“Thanks for thinking of us and for your advice”

Final note

I would like to thank our wonderful team of Active Listeners who have made this work possible, and continue to support English-speaking people who attend the Toulouse Oncopole.

Jayne Ray, President CSF Gascony – March 2023

Did you know that 4th Feb was World Cancer Day, an annual global event, designed to raise people’s awareness of cancer?

Here’s what former CSF President, Penny Parkinson, has to say about the history of World Cancer Day.

“It began on the 4^th February 2000, the date that the World Summit against Cancer for the New Millenium, adopted the Paris Charter. This Charter promotes research to cure. as well as prevent the disease, aims to improve services to patients and mobilises the global community against cancer.

Article 10 of the Charter designated 4^th February as World Cancer Day to ensure that the Charter of Paris would remain in the hearts and minds of people around the world.

With a slogan of “We Can.  I can.”, World Cancer Day encourages us all, both collectively and individually, to play our part. Here in CSF, our Associations use their fundraising activities to raise awareness of cancer and participate with others in campaigns promoting screening.  As individuals, we can also play a part, however small, to support these initiatives.

Do go and have a look at the World Cancer Day website: –  www.worldcancerday.org – it is truly inspiring to see how many people are taking part, from businesses; cancer organisations; cities; governments; healthcare professionals and schools, as well as many individuals. There is a live Twitter feed showing people tweeting from all over the world about what they are doing to get involved on the day, each year. As a cancer sufferer, carer or volunteer, the day shows you that you are not alone.“

World Cancer Day is is the global uniting initiative led by the Union for International Cancer Control (UICC). Cancer Support France is a Global Network Member of (UICC), who put this annual event together.

The theme for World Cancer Day 2022-2024 is ‘Close the Care Gap’. Read more about this and what is happening on the day at: –

https://www.uicc.org/what-we-do/convening/world-cancer-day

On the UICC website, you can listen to their: –

• regular podcastes (complete with transcript)
• read up on news and announcements
• read blog articles submitted to the site
• find out about cancer in the news
• discover upcoming events
• look at published reports

Although this is a past event, you can keep up-to-date with future events at:https://www.uicc.org/

Penny Parkinson – April 2023

(Modified by M York – July 2023)

Our new logo has just been announced. Chosen by all our Associations, the reason for the change was to emphasise our name (Cancer Support France) over our abbreviation (CSF), given that our name gives such a clear description of what we offer. It is hoped that this simple change will lead more English-speaking people in France to become aware of us in case they should ever need our support.

The logo at the top our webpage will shortly be updated to reflect the change; in the meantime, here is a sneak preview.

Ian Salvage – February 2023

With summer around the corner, perhaps you are considering a trip to Paris. Why not drop in on this exhibition while you are there.

The exhibition ‘Cancers’, running in Paris until August 2023, has chosen to put the patient at its heart, but also care personnel and carers, using numerous personal stories of life during and after cancer.

It also allows visitors to better understand the illness and its treatments, displaying current scientific knowledge and also covering treatment mechanisms such as conventional therapies (radiotherapy, chemotherapy and surgery) and new ones (immunotherapy, hormone therapy). It includes sections on risk factors, prevention and screening.

In its desire to provide service to the public, the Cité des Sciences et de l’Industrie positions the ‘Cancers’ exhibition to make the illness better known (still often taboo in many aspects), and to offer to the public the promising evolutions in research.

Ian Salvage – January 2023

This month, Cancer Support France is supporting Movember.

Movember is one of the leading charities trying to reduce the number of men dying prematurely from prostate cancer, testicular cancer and suicide.

Movember funds projects around the world, and aims to reduce the number of men dying prematurely by 25% by 2030.

To sign up to take part or to donate go to either: – uk.movember.com or: – fr.movember.com

Margaret York – November 2022

On the occasion of our 20th anniversary, our past President, Penny Parkinson, wrote the following article for Pyrénées-Orientales Life on the history of Cancer Support France: –

If you keep your eye on the English press, you may have spotted that 2022 sees the twentieth anniversary of a famous cancer association called CRUK – Cancer Research UK.

Closer to home, 2022 also brings the twentieth anniversary of our very own cancer Association – Cancer Support France.  Unlike CRUK, whose mission is focused on research, Cancer Support France (CSF), with its mission of ‘Free, confidential support for English speaking people touched by cancer’, is focused on the individual.

You have seen our CSF banner and an advert perhaps or attended an event but do you know how CSF started and what it does?

CSF began life in 2000 around a kitchen table in the Poitou-Charentes after it’s founder, Linda Shepherd, struggled to come to terms with her radiotherapy treatment.  A fluent French-speaker, Linda needed to unburden in her mother tongue.  She simply could not express her deepest fears in a foreign language.   On discovering other English-speakers with similar problems, she started a regular coffee meeting in her home.  Linda became aware that it was not only the patient who was being affected by the illness and its treatment.  Partners, family members and friends, were struggling with their own problems and were invited to join.

Soon Linda was providing a service by telephone for those who could not make the coffee dates and in 2002, with the support of her oncologist, Linda was encouraged to register as a French Loi 1901 not-for-profit Association.  The kitchen table became a small office in her local Mairie and Cancer Support France was born.  The aim of the Association was (and still is): –

To support English-speaking people living in France who are touched by cancer,
whatever their nationality or country of origin.

Support is thus given to anyone as long as they can communicate in English.  The use of the word ‘touched’ ensures that others within the patient’s entourage are included.

CSF, however, is not just a coffee group or a friendly telephone call.  Linda recognised that what was offered could be so much better than a ‘chat’ if her members had training in the art of active listening.  Initially, Macmillan were happy to help and, since then, CSF has developed its own training programme to reflect its unique situation – supporting people who are struggling to handle a serious health situation in a foreign country, with a foreign health system and a foreign language.

Although telephone support can clearly be given from anywhere, some people were needing more ‘hands-on’ help.  In particular, with the language.  Like Linda, it is not only those who speak poor French, many people find that their powers of expression diminsh as they try and come to terms with a life-threatening illness.  As a result, new CSF Associations sprung up, predominantly in areas with a concentration of Anglophones.

To ensure that all these new Associations were themselves supported, CSF (National) was created in 2010.  Linda became its first President.  The National Association, amongst other things, provides the CSF website and Forum and liaises with national and international organisations like ECPC (European Cancer Patient Coalition).   Membership of this important body gives CSF an opportunity to comment and contribute to patient support at a European level.  And you may be interested to learn that CSF is currently unique in Europe.  It is the only Association operating in a foreign country in its own language.

Most importantly, CSF (National) provides a national telephone and email helpline.  These are monitored by a team of Active Listeners from various Associations and a response within 24 hours to any contact is guaranteed.  To give you a flavour, in 2021 around 251 contacts were taken by the helplines.  Just over a 100 were passed on to local Associations, the remainder were handled by the helpline team with information and signposting to other sources of support.

Before she retired from active involvement in 2014, Linda’s final achievement was to sign a partnership agreement with La Ligue contre le cancer.  This gave CSF the right  to use the La Ligue contre le cancer logo on its flyers and website.  More importantly, with La Ligue contre le cancer being known to every French person, the status of CSF as a respected charitable association was assured.

Today there are 16 CSF Associations, all affliated to CSF (National).  The local Associations vary considerably, some cover a small geographical area, others support people across multiple departments.  Of course, in areas which do not have a local Association, people can still receive emotional support and practical information by phone, Skype, email, Zoom and so on.  Even language support can be given by telephone with the consent of the medical team.  No-one who needs CSF is ignored.

As well as emotional and language support through Active Listeners, CSF Associations provide additional support depending on their membership and local needs.  This could be in the form of monthly coffee mornings or Drop-in days which enable people to meet in a safe space. Or regular book or other sales with an Active Listener on hand to both support and fundraise.  In addition, there are annual events, summer fairs and autumn balls, bien-être days and music evenings.  CSF (National) organises an annual ‘Activity for Life’ which this year is called ‘A Lot of Cycling’ – have a look here for this exciting event taking place in the Lot in September: –

https://cancersupportfrance.org/activity-life-2022

It is only possible to give a taste of what may be available; do have a look at the CSF web pages or Facebook for your local Association and discover activities in your area.

CSF also benefits from invitations to events organised by others, such as Christmas markets where members may have a CSF stand or perhaps run the tombola.  This gives an opportunity to both fundraise and enhance the CSF profile within the French community.  Although all CSF members are volunteers, it is necessary to raise funds to ensure the continuation of the core work of the Associations.  CSF receives no grants or subsidies and any funds raised are used solely to support this work.

If you would like to find out more about CSF then do not hesitate to contact us, see the contact pages.

Penny Parkinson – October 2022

Sue Smith, our President, recently appeared in a podcast produced by an organisation that broadcasts on topics related to life in France for Anglophones. In the podcast, Sue talks about our 20-year history, how she came to be involved in Cancer Support France, and how we operate today, with a look also, into our future.

Enjoy this 25 minute broadcast, available here.

Why not also share the link with family and friends.

Ian Salvage – October 2022