Video trailer – LESS

Jeg fandt denne video for et stykke tid siden, mest af alt en dokumentar (in the making) om kvinder der står frem og fortæller om deres kamp i forbindelse med diagnosen bryst kræft – om deres opfattelse af deres ændrede krop bagefter.

Jeg håber, at den opnår den støtte den har behov for, for at blive lavet.

Den kan især være til gavn for dem, der har fravalgt rekonstruktion.

 

 

 

Den kan også ses her:

 

Our Documentary – LESS

 

OUR DOCUMENTARY

“What is so bad about being a human being?” Asks the New York artist Melanie Testa, who has opted against breast reconstruction after her bilateral mastectomy. She and thirteen other breast cancer survivors from the USA and Europe step in front of the camera of photographer Esther Haase to celebrate the beauty of existence itself.

Another of them, Uta Melle, mother of two daughters, points out that “femininity does not depend on two curves.” Like the others in the group, she denounces routine breast reconstruction because of the trauma of additional surgeries and the implied suggestion that society only recognizes women for how they look, not for who they are.

Saga Sofie Jouatte, Silke Kress, Alex, Uta Melle, Urte Evert, Thedra Cullar-Ledford, Britta Akdogan, Kirsten Pluntke, Simone Pfitzner, Martina Rüscher & Melanie Testa photographed by Esther Haase

“There are many of us. And we need to be seen.” Adds Saga Sofie Jouatte and shows a message she got on her smartphone: “A picture of you helped me believe that I could remove the implants I hated. Thank You!”

“That’s why we don’t hide,” they all state, “to strengthen other cancer patients with bilateral mastectomy. To serve as role models that our society isn’t used to. Because everybody is different. Beauty is different.”

And that’s what it is about: 14 amazing and different queer as not queer people. We shot our new documentary LESS while spending days with these powerful women. We let the interviews and images follow as we captured how scars are uncovered, stories are told and friends are found. We noticed how perceptions of identity and diversity are altered when a life-or-death challenge like cancer causes a person’s perception to change.

We came away from the experience with touching footage of our protagonists expressing their deepest thoughts – emotional and political, radical and poetic, courageous and often funny. Fourteen “Flattoppers” claiming the right to be visible, dreaming of a society where breast-cancer-scars are not a stigma, but rather a badge of honor for going through the hardest of times and emerging full of life.

 

Britta Akdogan photographed by Esther Haase

WHY IT MATTERS

Breast cancer gets a lot of attention, but people with breast cancer mostly do not. While this film features breast cancer survivors, these brave women represent something larger. With the absence of their breasts, their so-called most feminine parts, they quietly question society’s presumptions about what a woman should be or do. They are calling for something each of us desires – an accepting and compassionate society where we can all be ourselves, no matter what. We amplify their voices through film and distribution, helping in our small way to make the world just a little more understanding.

Emily Jensen and Saga Sofie Jouatte

 

 

Saga Sofie Jouatte photographed by Esther Haase

OUR PROTAGONISTS

Our film’s protagonists are housewives, artists, mothers, managers, activists and businesswomen. Some are queer, some are not. They are young and old, still in treatment, done with treatment, or back into the fight for a second or third round. Some have little chance of beating the disease but astonish with their life force. Each has a story to tell, of discovering who she really is and how hard she can fight to be herself. Meet them yourself – in LESS.

Esther Haase photographing our protagonists

 

 

Simone Pfitzner, Emily Jensen, Thedra Cullar-Ledford & Silke Kress

HOW YOU CAN HELP

We had no budget or funding for this documentary, when Uta Melle invited us to document a gathering of women in Berlin on a Photoshoot of Esther Haase. Immediately convinced by the relevance of the topic we rushed to interview and capture them on film. We are not new to the film business, so we knew when we left that we had something very special that needs to be a feature-length documentary. While we have financed this project with personal funds to this point, all the work that remains requires the use of facilities and specialists who will require at least some payment to help.

We need the sensitive hand of an experienced editor in a rented editing suite to do a rough-cut to take into post-production. At that point we will need other specialists in a post-production studio for color grading, visual effects, soundtrack and a cinema-suitable sound mix to accomplish the final cut.

It is important for you to know what we will do with your donations:

–  55% goes to pay for the specialists

–  30% goes to rent facilities and equipment

–  7% goes for subtitling into English and German

–  the remainder (8%) goes toward Indegogo and Paypal fees

If we do not reach our funding goal, we will use the amount we raise to continue moving forward with LESS by cutting a rough draft. Be assured our documentary will be completed in any case.

Of course we would love to exceed our funding goal because there are even more expenses to come once the film is completed. We have ambitious plans: We want to place the documentary at major international film festivals (submission fees), bring it to the public (costs for all kinds of PR work), find the right cinema distributors, offer LESS to international TV channels (travel costs to screenings or to meet distributors and TV editors) and distribute it online. How wonderful would it be if, together with you, all these plans could come to pass!

Our protagonists Uta Melle, Thedra Cullar-Ledford, Alex, Britta Akdogan, Silke Kress, Urte Evert, Simone Pfitzner, Martina Rü, Kirsten Pluntke, Melanie Testawith with photographer Esther Haase 

 

Previvor og FORCE

Jeg vil rigtig gerne dele et link der kan være til gavn – lidt info om oprindelsen af ordet Previvor, samt FORCE (Facing Our Risk of Cancer Empowered)

Det kan være en hjælp til ikke at føle sig alene i alt det her.

Det er stadig mit håb, at et stærkere netværk i løbet af en årrække bliver stablet på benene her i Danmark. Det savnede jeg i hvert fald da jeg gik fra genetisk afdeling med ordene “Det er usandsynligt at du ikke får kræft” rungende i mit hoved.

Men indtil da må vi forsøge at finde hinanden på bedste vis. Du er ikke alene 🙂

 

FORCE

 

 

Previvor: Past, Present, & Future

July 22, 2008

Use of the term “previvor” has become common, which, in my opinion is good for our community. Since popularization of the term increases the chance that its meaning and origin can get lost or forgotten, a post on the origins and future of the term seems timely.

I have seen some people react strongly (with intense like or dislike) to the term, which I can understand. By sharing the history and reason why the term was coined I hope to help people accept or at least understand the intent and meaning behind the creation of the term.

In 1998, after finishing my treatment for breast cancer and after learning that I had a BRCA 2 mutation, I sought out breast cancer support groups. Because of the hereditary component to my cancer, I felt that others in the group couldn’t relate to many of the issues I was facing. My needs were not entirely met by the standard cancer support group model. Along the way I met women who were high-risk because of a BRCA mutation or other risk factor but who did not have cancer. These women became my friends and inspiration; certainly they were facing difficult decisions and issues that most of their friends couldn’t understand or relate to. With a diagnosis of cancer I immediately joined an already well-established community (albeit one I didn’t want to belong to) and instant access to support and resources via great organizations such as Gilda’s Club, the Wellness Community, and local support groups. Sadly, I noticed that many of my new high-risk friends without cancer felt alone, and not comfortable with using resources and forums created specifically for people with a cancer diagnosis.

I founded FORCE in 1999 under the principle that nobody should face hereditary cancer alone. Our goal has always been to include all who have been affected by hereditary cancer: those with cancer and those without, those with a known mutation and those with cancer in the family even if no BRCA mutation has been found. FORCE was also established to provide a home and safe haven specifically for high-risk women who had very few other safe and supportive places to share their common experiences.

The term “cancer pre-vivor” arose in 2000 from a challenge on the FORCE message board by Jordan, a website regular, who posted, “I need a label!” At that time I knew that the medical community had a label: the term “unaffected carrier” is used to describe those who have a gene mutation but have not had cancer. The term applies from a medical perspective, but can be dismissive for people who face the fears, stress, and difficult choices that accompany an increased risk for cancer. As a result, FORCE developed and promoted the term “cancer previvor” for “survivor of a predisposition to cancer.” The term includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor who are living with the knowlege of being high-risk.

Over the years the term previvor has been incorporated into the FORCE lexicon. Due to the enthusiastic use by our community and the medical community’s lack of a better word, the term has slowly been accepted by the medical and research community. In 2007 a series of high-profile articles in the New York Times brought public attention to the term and the serious issues that cancer previvors face. In December 2007, Time Magazine chose “previvor” as #3 of the top buzzwords of 2007 giving millions of people exposure to the term.

What does the future hold for the term and the community? The explosion of genetics research has led to the discovery of genes that predispose people to many different diseases. One of the powerful promises of genetics research is the ability to better predict risk and develop effective strategies to prevent diseases like cancer before they develop; this is an area where we have great potential to make an impact on the wellbeing of this and future generations. With the discovery of more genes that predispose to an assortment of diseases; cancer, diabetes, Alzheimers, we can expect that more people will learn that they are at high-risk for something. And risk is a spectrum: not all risk is created equal. Someone with a 25% lifetime risk for breast cancer for example,(compared with the population risk of 12.5%) may have a different set of issues to face and choices to make than someone with an 85% lifetime risk for the disease. These emerging “previvors” will face new challenges and dilemmas that may be different from those faced by the BRCA community but which require a new set of devoted resources. Through recognition and awareness of the unique issues each high-risk group faces we can begin to address their information, resource, and research needs. Perhaps this will require the development of a government agency–maybe an “Office Of Previvorship” (OOPs for short?)–with committed resources and funding to study and try to meet the medical and emotional needs of those who have hereditary predisposition to diseases.

The development and success of the term previvor is just one example of FORCE’s continuing role in uniting and providing a strong voice for families touched by hereditary cancer. For more information on FORCE and our programs, visit our website at facingourrisk.org.

 

 

10 ugers opdatering

Her en lille 10 ugers opdatering 🙂

Der er ikke sket meget, ærlig talt!

Arrene er begyndt at blive lidt mere røde i det – men bare rolig, hvis det sker for Jer, det er helt OK og meningen, det er blot fordi at der er blodgennemstrømning osv. Det er en del af helingsprocessen.

De små flapper ude i siden er -igen- blevet en smule mindre, så det går fremad.

Mht. smerter og føling, så er jeg stadig lidt “sær-bedøvet som om jeg havde været hos tandlægen-øm” i den ene side. Og det heler stadig, indeni. Forleden sad jeg i min drengs Tumletop og legede med ham, og da jeg skulle ud af den, blev det yderste/øverste af ryggen presset ned i mod, og det gjorde altså ondt, og gør det stadig, lidt som et blåt mærke. Så husk at være forsigtige, stadigvæk.

Til gengæld kan jeg så småt begynde at løfte ham igen, og det er fantastisk at kunne. Bare lidt, en gang imellem, op i indkøbsvognen osv. Husk at bruge hele kroppen. når I løfter, og start i det små 🙂

Bevægeligheden står lidt stille, ikke meget fremgang at spore, men jeg har ringet til sygehuset og fået en ekstra tid hos deres fysioterapeut om et par uger, bare for en sikkerheds skyld.

Nå! Jeg har taget et par billedet, så I lettere kan forestille Jer, hvad I måske har I vente.

Her er taget lige foran

DSC_0187

 

Her er også et tæt på af ét af arrene (alle de folder der er, er fortsat pga. plasteret, det sidder jo lidt til. Det skal af om få uger, glæder mig!)

DSC_0188

 

Det var vist det hele herfra, god mandag til Jer 🙂