1

Editorial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1Breasts aren’t the half of it . . . . . . . . . . . . . . . . . . . . . . . 2Breasts and body image: preserve and rebuild . . . . . . . . 4Breast reconstruction: personal testimonies . . . . . . . . . . 5Interview: a conversation with Gungerd Lemon . . . . . . . 6Research: Talking, not telling . . . . . . . . . . . . . . . . . . . .7-8Obituary: farewell to Irina Kozulina . . . . . . . . . . . . . . . . 8Volunteering & training . . . . . . . . . . . . . . . . . . . . . . .8-10News from around the world . . . . . . . . . . . . . . . . . .10-13Announcements . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13Conferences & Events . . . . . . . . . . . . . . . . . . . . . . .14-15Books & Poetry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15

Editor-in-Chief: Ann SteynEditorial Board: Ingrid Cox, Jeff Dunn, Ranjit Kaur, Isabel Mortara, Silvia Perel-Levin, Páraic Réamonn, Anna-Maria VandelliDesign: Carlos Ocampo Layout: Ingrid Cox

Contents

The body issue

Welcome to the April issue of bloom! This edition is all about body image – a subject of concern to all of us who have experienced

breast cancer . It’s a bit of a buzz term, but body image is how you feel about yourself and your body – a healthy body image is feeling happy in your own skin, and it’s crucial to well-being . Not surprisingly, breast cancer and its treatment can radically alter your body image . Having breasts is a defining feature of being a woman – so how do women cope with mastectomy? What are the pros and cons of reconstruction, and what are the reasons some women choose to get implants while others prefer to live with a missing breast? And how do treatment side effects, such as hair loss, lack of sexual desire or weight gain, affect how women feel about themselves?

To offer us different perspectives on breast cancer and body image, we asked an oncology surgeon to talk to us about mastectomy and reconstruction; and a psychologist to recount how women cope emotionally with the impact of breast cancer on their bodies and their lives . Two women from South Africa also wrote us personal testimonies about their choice of whether or not to have breast reconstruction .

These articles remind us vividly of the enormous impact breast cancer has on women’s bodies and minds, and how

tight the connection is between the two . It’s a key issue for us RRI volunteers in our relation-ships with breast cancer patients, so please share your thoughts and ideas with us: is there something more we could be doing to help women main-tain a good body image through diag nosis and treat-ment? What con-cerns should we be sharing with the medical pro fession? Many of you have

strong opinions about these matters, so please share them with us and stoke the debate by addressing comments or questions to us at bloom@uicc.org .

Over the next few issues of bloom, we plan to interview all the past presidents of RRI . Each one of them has played a key role in the development of Reach to Recovery, so I hope you will find their comments of interest . For this edi-tion I talked with Gungerd Lemon, a gracious lady now in her eighties, who was RRI’s President from 1994 to 1996 . Among other subjects, she too speaks of how she dealt with the changes in her body after cancer .

In the News Around the World section, you will find some interesting reports from far-flung Reach to Recovery groups . It is always rewarding to learn what women are doing worldwide to give support to patients, assist in community education, and raise funds for breast cancer programmes . Sharing our knowledge and experience is an important part of belonging to the Reach to Recovery family – I would like to draw your attention to the article on the Finnish Mama Programme, which may provide useful insight for countries where screening options are limited .

You will be saddened to hear that Irina Kozulina, the eastern European representative on our Executive Com-mittee passed away in March . We will miss her wise input and dynamic presence enormously . You can read about her achievements in the Obituary section . We had hoped to announce the members of the new RRI Executive Com-mittee in this issue, but since nominations have been

© A

riela

Sha

vid

(Isr

ael C

ance

r A

ssoc

iatio

n)

The Newsletter of Reach to Recovery International Issue 9/April 2008 bloom

Bloom April 2008

2

Asked about body issues after breast cancer, most people’s minds turn to body image, and how women manage to live without breasts . Many cancer

specialists also think this way, and believe that progress in surgical reconstruction is solving the problem . But is the choice of whether or not to reconstruct their breasts the central question women face?

The impact on their breasts is of course a big issue for women . Michèle recollects her experience: “The moment I woke up after surgery, the reality was there: a bit of me was missing . I felt betrayed by this breast that I had loved, that had been loved, that had fed my son for nine whole

months, that was an integral part of my femininity . It took me a year to dare to touch my breast with my whole hand – until then, I looked after my scar with my fingertips .”

For others, missing a breast may seem like the least of their problems at the time, but the issue emerges later on, as illustrated by Claire: “Breast cancer turned my whole life and my whole body upside down, so the idea of getting a silicon implant seemed pointless to me . It’s only now, many years later, that I realize I “sidestep” my breast when I’m in the shower, without touching it at all .”

Breasts’ endless (over)exposure in media and advertising makes it even harder for women to face an illness that strikes them at what society considers the core of femininity .

But beyond this, breast cancer and its treatment create many physical, cognitive and psychological disorders – some temporary, others not . The disease disrupts women’s entire body references, and they often report that they don’t recognize themselves anymore, or understand how their bodies function and react . Women sometimes feel so struck in their bodies that it’s as if their identities were at stake . Silvana doesn’t mince words: “On 12 December 1998, I watched my pubic hair disappear down the plughole of my bathtub, and I felt like I was going down with it .”

In addition, there is often a considerable im-pact on sexuality, which women sometimes manage to overcome, sometimes not .

“I feel like I’ve been unplugged .” “Zilch . No sex drive whatsoever . A total shock .” “My husband was never able to touch my damaged breast .” “The first time I made love with my partner, I kept my breasts covered . I felt cut in half, like I was just a sexual organ, since my top half was blacked out . We slowly, patiently found a new harmony, but it took a lot of work .”

coming in slowly, we are postponing the announcement until the next bloom . We are about to finalize the com-mittee, however, so please send any further nominations you wish to make as soon as possible (email rri@uicc.org or fax +41 22 809 1810) .

The next Reach to Recovery International Conference, which will take place in Brisbane in May 2009, promises to be an informative and fun-filled event, with something of interest to every Reach to Recovery volunteer . We are now a truly global organization, and sharing ideas and challenges that may face us can only enrich the work we

do . I encourage all of you to travel to Brisbane to share this experience and enjoy the renowned Australian hospitality . An invitation card is enclosed in this issue, and you can visit www.reachtorecovery2009.org for information about the programme, travel grants and early bird registration .

I hope you will find this issue a good read . Please remember this is your publication and we welcome your articles and suggestions!

Until next time, warm Reach to Recovery greetings,

Ann Steyn President, Reach to Recovery International

2

Editorial Lead article

Breast cancer and body image: “Breasts aren’t the half of it”

Author’s note: When I was asked to write an article on body issues related to breast cancer, my natural impulse was to turn to the real experts: women who have lived through this illness. Everything I’ve learnt about breast cancer and daily life, I’ve learnt from them. The women quoted in this article are all members of the “Breast Cancer and Quality of Life Committee”, a working group that gathers women from all over Switzerland. I thank them for their bravery, and the power and beauty of their words.

© M

aris

a A

coce

lla M

arch

etto

200

6 (f

rom

the

gra

phic

nov

el “

Can

cer

Vix

en”)

Bloom April 2008

33

Lead article

Breast cancer changes the surface of women’s bodies, and their very depths . So how do they cope?

“It’s a long road of loss and mourning with all the usual milestones of shock, denial, anger, bargaining, sadness, and one day – much, much later – acceptance,” says Silvana . “I needed all my faith and inner resources . Thankfully there is love, and a sudden, hidden strength that rises up and pushes you forward .”

“Psychotherapy helped me to realize that my body hadn’t betrayed me, it had saved me,” says Camille . “I hit rock bottom, then found the strength to break free and allow my-self to breathe without fear .”

Laurence has a more pragmatic recipe to share: “1 . Wear beautiful lin-gerie, hats and earrings – anything that enhances your external beauty; 2 . Take baths, go for a massage, do whatever makes your body feel good; 3 . Try not to feel guilty about your cancer;

4 . Talk as much as possible with your partner about your fears . 5 . Make sure you stay in control of your treatment and of your life; 6 . And finally keep making projects and live as much as possible, according to what you can manage at that time . Life is so much bigger than illness .”

Open and honest communication is a big key to dealing with the impact of the disease and its treatment . Although many women feel uncomfortable talking with their doctors, they agree a real dialogue is important . Partners also offer women enormous help in learning to accept their bodies: “At first, my damaged breast was a great source of anxiety to me,” Camille explains . “I thought it was ugly and I was scared to show it to my new partner . But he spontaneously felt the need to look after that breast, to comfort it for all the tenderness it wasn’t getting .”

While women stressed the rewards of talking to those closest to them, they also gained a lot from reaching out to other women in similar situations: “The one thing that helped me rebuild my confidence was to help other women diagnosed with breast cancer,” says Silvana . “Working alongside extraordinary women to help improve care conditions for cancer patients helped give my illness a meaning, and has made me love life even more – my life .”

Dealing with all the body issues that breast cancer brings up is a question of time and inner resources, but also of accessing adequate support . A whole host of physical and psychological issues often go unmentioned, and women who have just been diagnosed or who are undergoing treatment may not be in good enough physical or mental shape to bring up these intimate subjects themselves . It is up to the health professionals and volunteers working with breast cancer patients to raise these issues, listen to what they have to say, and help them resolve their specific concerns as best they can . Such support should be made an integral part of breast cancer care, so that women are not left alone to deal with the consequences of their breast cancer diagnosis and treatment .

Angela Grezet-Bento de Carvalho Sociologist, psychotherapist, and

Breast Cancer Network coordinator, Association Savoir Patient, Geneva, Switzerland

Body image - further resourcesA low libido and problems with body confidence may seem like the least of your worries when you are fighting breast cancer for your life . . . But these can grow into major issues that, as you get better, threaten to spoil the picture of your newly regained health . It’s important not to bottle up your concerns but to communicate as openly as possible with people who can help: it could be your partner, close friend, doctor, psychologist, or a Reach to Recovery volunteer . A lot of information and advice is also available online . Here are a few links of interest:

www.breastcancer.org/tips/intimacy

This website provides lots of information and insightful advice on coping with the changes in your sex life after breast cancer, and features interactive “Ask the Expert” conferences where readers can ask questions online .

www.breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

This UK breast cancer care publication offers advice on coping with hair loss and making the most of your new look with hats, wigs, scarves and make-up .

www.thebreastcaresite.com/tbcs/Renewal/BodyImageThis website includes articles on all kinds of topics related to body image, including learning to look at your changed body and accepting the new you, and practical tips for looking your best (hair and skin care, etc .) .

© J

esus

Mor

eno

Photographs of Silvana Hertz from “Exposition Cancer du Sein: Témoignages” (Association Savoir Patient), a travelling exhibition on breast cancer. Posing for a professional photographer during breast cancer can help some women come to terms with their new self-image and learn to see themselves as beautiful again.

Bloom April 2008

4

Despite considerable progress in the development of conservative surgery, we still have a long way to go in terms of preserving optimum body

image during and after breast cancer treatment . One major obstacle is that women – and some doctors – find it difficult to accept that the belief “the more you cut, the safer your future” is simply not true . It cannot be repeated often enough that breast cancer mortality was actually higher in the past – when all patients underwent Halsted (radical) mastectomy – than today, when breast conservation is so common worldwide .

Cutting back on the cuttingThe progression has been gradual: surgeons first started

to preserve the major and minor pectoralis muscles (which Halsted mastectomy removed despite the fact they have nothing to do with the mammary gland), then reduced the extension of the surgical removal to the portion of the breast containing the tumour (lumpectomy, quadrantectomy), then limited the number of axillary lymph nodes removed to just a few (sampling in elderly patients) or even one (sentinel node biopsy, which drastically reduces the risk of lymphoedema) .

When mastectomy is still necessary (because of multi-centric tumours, small breasts, or large and slow-growing lumps), evidence is currently growing that, in most cases, it is possible to preserve both the areola and the nipple, since their removal has no impact on prognosis .

Tending the other breastWhile we are rightly cutting back on over-aggressive

inter ference with the diseased breast, we must also do more for the healthy breast: the so-called “reshape” of the opposite breast should be seen as a mandatory pro-cedure when surgery of the affected breast is likely to leave a woman with an uncomfortable imbalance in body shape, and problems with fitting a normal bra . This proce-dure is actually also a considerable help in gathering addi-tional pathological information on the level of risk for the contra lateral gland .

Rebuilding the affected breastBreast reconstruction was seen as a dangerous procedure

for many years, due to some epidemiological studies that suggested that silicon prostheses might be carcinogenic . This erroneous view has been abandoned, and different

options are now available for reconstruction, with a great variety of implants in terms of both size and shape .

In the past, there was no dialogue between the oncology surgeon and the plastic surgeon . Women first underwent a mastectomy, and were then sent to the plastic surgeon for reconstruction . Nowadays, and especially in certified breast units, the plastic surgeon is part of the team and (s)he participates in the initial discussion with the patient and in the decision on the kind of operation that will be performed . This new approach has the great advantage that the two surgical approaches (oncological to eradicate the disease and plastic to keep the body in reasonable shape) are decided on together and often performed at the same time .

Cases in which it is not possible to proceed with an immediate reconstruction are very limited and the general tendency worldwide is to make sure that no woman wakes up from surgery with a completely missing breast: what is usually done is at least to insert an “expander”, a device which takes advantage of human skin’s incredible elasticity (think of what happens during pregnancy!), and which will stretch the post-mastectomy skin to enable it to host a definitive prosthesis of the proper size at a later date .

A woman’s choiceAs a breast cancer surgeon, I have witnessed great

changes in women’s attitudes to these issues over the years . Of course, many factors influence women’s decisions regarding breast reconstruction, including their personal relationship with their body (“Can I look at myself like this in the shower every morning?”), their relationship with their partner (“Can (s)he cope with my body like this?”), their profession (“I’m a TV journalist, how can I always cover my cleavage?”), and their financial situation (not every country reimburses reconstructive surgery and not every woman can afford to have it done privately), etc . In my experience, women are now more assertive in protecting their body image (“You know, doctor, I’m not a Moulin Rouge dancer, but in the summer I would love to be able to wear a T-shirt with no bra .”) .

The preservation of a good body image should be seen as an integral part of breast cancer treatment: this issue needs to be addressed not only by surgeons, but also by

4

Lead article

Breasts and body image: preserve and rebuild

Breast reconstruction - further resourcesMany websites offer up-to-date and detailed information about mastectomy procedures and options for reconstruction . The American Cancer Society’s website features a very thorough guide, “Breast Reconstruction after Mastectomy”, which includes helpful diagrams of the different types of surgical procedures, and a list of questions to ask your doctor . To find it, look up “breast reconstruction” on www.cancer.org. Other links of interest include:

www.breastcancercare.org.uk/content.php?page_id=663

Features an illustrated booklet explaining what reconstructive surgery is and who can have it, the different types of reconstruction and potential problems you may face immediately after surgery and in the longer term .

www.cancerbackup.org.uk/Treatments/Surgery/Breastreconstruction

Includes photographs of women’s breasts following different types of reconstructive surgery .

Bloom April 2008

55

Lead article

When I was first diag-nosed with breast cancer three and a half

years ago, I didn’t think about recon struction . All I could think was that I was going to lose my right breast .

Before my operation, the sur-geon talked to my husband and me about the possibilities of re-construction . She told me the

mastectomy itself would take an hour, but a reconstruction would take over four hours . I was already in a state, and the thought of a further four hours under the scalpel was too much for me to handle . They were cutting off a part of my body, and now they wanted to cut off more and transplant it into my breast . But what if the cancer came back on the same side? The surgeon said we would deal with that if and when it happened . But how would they deal with it? And what if I got an infection? I knew then that I was not going to have a reconstruction at the same time as my mastectomy .

Then the chemotherapy came . That meant no breast, no hair, and ill-fitting clothes . I really don’t have anything nice to say about chemotherapy . I had a very bad time . It was as if I lost my will to live . My husband thought a recon-struction might help to make me feel better . So I spoke to

the surgeon and she said she wouldn’t do the reconstruc-tion now because of the radiation I still had to go through . At this stage I needed counselling . The counsellor made me realise I could curl up in a corner and feel sorry for my-self or I could get up and live . I chose the latter, and made an appointment with the surgeon to do my reconstruction later . But it never happened . I got scared . I couldn’t live with the thought of something foreign in my body .

My scar doesn’t look ugly . I’ve compared mine with other ladies – you feel sore when you see their scars . Even my husband made the comparison . In his eyes I still look beautiful with or without my clothes . I just love it when he kisses or caresses my scar . It has become a very sensual part of my body .

I learnt to adapt to my mastectomy like others learn to cope with an amputation . If you lost an eye or a leg, you would get a prosthesis, get used to it and get on with your life . After a while it becomes a part of your daily routine: put it on and take it off . Many women believe that breast reconstruction improves physical appearance and has psy-chological benefits . This may be true, but a prosthesis can make you look good and feel just as good .

My mastectomy didn’t take away my femininity nor my sensuality or sexiness . I believe I still have a beautiful body . I am in control of myself . I am still me .

Faieza De Sousa, Cape Town, South Africa

My choice – I am still me

Why I chose reconstruction

In 2001, following a routine check-up, I found out I had cancer in my left breast and

was advised to have a mastec-tomy . My family was very support-ive and I went for the operation, but I worried about how I would look without my breast . During a counselling session, I was shown different reconstruction options and I saw pictures of women be-

fore and after the operation . I decided there and then that I would have a reconstruction .

Some friends and family tried to discourage me – they told me that I already had a husband and a family, that I didn’t need breasts . They worried about me subjecting myself to a further operation . But I was sure that I wanted to go for it . I was doing it for myself . It’s not that I felt I would be less of a woman with one breast, just that I didn’t want to look down and see a breast missing . And as an active woman, I knew that I would find wearing a prosthesis annoying .

I chose to have reconstruction at the same time as my

mastectomy . Unfortunately, the operation did not go well . The tissue expander in my breast got infected and had to be removed after two weeks . Nine months later, I went for another operation to reinsert the expander, and after that I went back for the silicone prosthesis . At the same time, my right breast was reduced and reshaped to match my left .

I have lived six years with my reconstructed breast and have had no problems . The nipple reconstruction failed, but despite this I am now very happy with my breasts . In fact when I compare myself to the way I was before, I think I look better! Originally my breasts were heavy and I had to wear unattractive bras . Now I can even go without wearing a bra . For me, having a reconstruction has turned a negative experience into a positive one . It helped me to return to a normal life and put cancer behind me . I only think about it now when I go for annual check-ups, and I think my husband has forgotten I ever had breast cancer .

Winkie Gum, Cape Town, South Africa

Winkie Gum is now a Reach to Recovery volunteer. She paddles in a dragonboat, and lives life to the full.

medical oncologists, in particular because some treatments (such as hormonal therapy) can dramatically change women’s body shape and cause distress and depression . We all want to beat breast cancer in a definitive way, but

surgery is not just about eliminating the disease . Quality of life should not be seen as optional anymore .

Dr Alberto Costa Director, European School of Oncology

Personal testimonies

Bloom April 2008

66

Interview

A conversation with Gungerd Lemon, RRI’s first president

Ann: Gungerd, it was very nice to see you again at the 14th RRI Conference in Stockholm last year – and amazing to

think that it was ten years since you officiated as RRI president at the 9th RRI Conference, also held in Stockholm! You have devoted a lot of your life to breast cancer work. May I ask, what is your own breast cancer story?

Gungerd: I was not the first in my family to deal with breast cancer . My mother was diagnosed in 1943, at a time when it was taboo to even mention the word “cancer” . She didn’t talk to anyone about it, even to me . Thankfully, she lived another twenty years after her operation .

Then in 1977, I found a lump in my left breast . I had radia tion therapy and a mastectomy, and throughout my experience, I was acutely aware that there was no support available for women like me . It was thirty years since my mother’s illness, but still, no-one talked about cancer . I had a very strong feeling that I should do something about it .

Later, I heard a Swedish doctor on TV talk about a pro-gramme in the United States called Reach to Recovery – I was immediately excited because this was exactly what I wanted . I wrote to her and told her I was prepared to help . Others also contacted her and we formed a group – the beginning of the Swedish Breast Cancer Society (BRO) .

What happened then? How did your organization grow?

We were very active: we wrote and distri-buted materials to schools, hospitals, every-one who was interested . We developed very good contacts with hospitals and with the parliament . It was exponential – people began to think and talk about breast cancer and to take action . The Swedish Cancer Society started a helpline to answer calls about breast cancer . Hospitals employed a special nurse to talk about breast cancer . And meanwhile, we trained volunteers all over Sweden . I was chairwoman of BRO from 1989 to 1993 . We had 16 societies with 15-20 volunteers each . It was a very good time; my wish was fulfilled: every woman who was diagnosed with breast cancer had someone to talk to .

You had a second episode of breast cancer a few years later – how did you cope with that?

I got cancer in my other breast in 1984, and I had a second mastectomy . But by that time I was much more balanced – I had survived the first cancer, I would survive the second . There was no drama . At first I hesitated to tell others, because it is scary, but I think it is important to say, you can get it again . But you know, many women survive even their recurrences . I have survived one cancer 31 years, the other 24! And I’m not sure I won’t get it again . I know friends who got cancer again after a very long

time . I take it as it comes . I live with the fear . Worry and bitterness are useless .

In this issue, bloom is address-ing the concerns many breast can-cer patients have with their body image. Tell us, what helped you during your ex-perience?

After my first ope-ration, it was a great

shock to me when I saw my body . I couldn’t bring myself to look at my missing breast . But one day my physio-therapist said to me: “Look at your scar – this will be fine .” She touched it very gently, and the way she did it made me

think that perhaps it would indeed be fine .

What message would you give to women who have difficulty making peace with their bodies after cancer?

My message would be this: breasts are good for babies; breasts are attractive to men; but for a woman herself, breasts aren’t that important . They are not your liver or your limbs . You can live very well without them . In fact you can live almost as you did before the operation – you can even dress the way you did before, except perhaps for a deep décolletage! More important than the way you look is the way you are . You were wonderful with your two breasts and

you are wonderful without .

You didn’t opt for breast reconstruction?For my first surgery in 1977, it wasn’t an option . For

my second, I could have chosen to do it, but I had no interest . I had already lived for several years without one breast, I knew I could cope without the other one . I wear prostheses in my bra, but in the summertime I take them out . People know me – they know sometimes I have a curvaceous silhouette and other times I’m flat! My time of attracting men is over, anyway – I’m 87! But I would not recommend to women to choose a reconstruction or not to do so – it is a very individual decision .

What do you think is important for the future of RRI?

Volunteers are our future . They are marvellous women – they go for training without being paid, they give of their time and energy, their empathy, everything . And they do it to help another person . Everyone who helps another person makes the world better – it is that simple and wonderful .

To women who have difficulty making peace with their bodies after cancer, my message would be: breasts are good for babies; breasts are attractive to men; but

for a woman herself, breasts aren’t that important. You can live very well without them. More

important than the way you look is the way you are.

Bloom April 2008

77

Research

Talking, not telling: narrative communication in cancer prevention and control

Cancer prevention information has traditionally been presented in didactic ways to educate and persuade the public . Facts and figures have their

place, of course, but it seems many people may respond better to stories . Narrative forms of communication, such as entertainment education, journalism, literature, testimo-nials and storytelling, are therefore emerging as promising alternatives to didactic information .

You can’t argue with a storyAlthough people may know how to behave to minimize

some of the cancer risks, they often fail to do so . Some of this resistance can be addressed using “modelling”, i .e . seeing others successfully perform a behaviour . For instance, if a woman learns through a story what it’s like to have a mammogram, she may be more willing to have one done herself .

Listening to a compelling personal narrative is more con-vincing to most people than wading through a brochure full of dry statistics . Basically, people are less likely to counter-argue if they are immersed in a story . And since narratives tend to be concrete, presenting the lived experi-ence of others, it may be more difficult to discount them . Narratives may also reduce resistance because they are a subtler, less threatening form of persuasion . Individuals who might stay away from anti-smoking pamphlets out of fear, for example, might not actively avoid a narrative with an anti-smoking subplot in the same way .

Stories are easier to digestThere is considerable evidence that social information

is stored in people’s memory in narrative forms, and that such information is easier to remember . There is therefore good reason to believe that the use of narrative for cancer-related information is a good way to engage people and to facilitate their understanding and recall .

These advantages may be of particular importance when dealing with people who have limited literacy and numeracy skills, or those who mistrust medical authorities . Irrespective of education or motivation, narratives might be of value to all individuals during diagnosis and treatment: connecting with a story is easier than focusing on complex information at a time when overwhelming emotions may be arising .

Stories provide social supportPeople develop relationships with characters in literature,

stories or news, even when the characters are fictional . These characters can provide a “para-social” relationship, which may provide many of the same benefits as real social relationships . For example, a breast cancer survivor narrative in which a woman recounts her initial feelings of despair upon hearing her diagnosis might provide a form of emotional support to another newly diagnosed woman by validating her own similar feelings . Likewise, a story

from a survivor about how she gathered and weighed the pros and cons of reconstructive surgery might introduce ideas and identify resources (i .e . provide informational support) that can help another woman facing the same decision .

People who might benefit most from social support narratives include those whose own social networks are limited, or who don’t know anyone else with first-hand experience of cancer, as well as people who simply feel more comfortable with the anonymity of reading, watching, or hearing about others who have coped with similar cancer-related issues .

Stories can tackle complex emotionsStories abound of cancer patients journeying through

despair, quests for meaning, personal growth, and spiritual transformation . These experiences show that, despite being a negative occurrence, cancer can actually deepen relationships, self-appreciation and meaning in life . Such transformation entails holding and celebrating contradictions . Although Western culture tends to place a premium on logical reasoning, humans don’t generally construct their experiences and sense of self in this way . Rather, they see life through multiple lenses – emotional, existential, psychosocial and physiological – and can therefore hold simultaneous and “contradictory” narratives about the same phenomenon . In the same breath, we can hope and despair; accept, fight and deny a terminal diagnosis; and recognize psycho-spiritual benefits in spite and because of tragedy and suffering . Unlike didactic formats, narratives can effectively express the nuances of illness and cancer’s existential dilemmas .

Narratives are no panaceaNarrative forms of communication may be especially

well suited to address cancer prevention and control objectives by helping to overcome resistance to prevention behaviours and health messages, by facilitating processing of cancer information, by providing social connections for those affected by cancer, and by representing emotional and existential issues that frequently emerge after a cancer diagnosis .

However, the use of narrative for cancer education has limitations . Narratives might be unnecessary or inappropriate for certain communication objectives, or they could unwittingly obscure important health messages by failing to cover all dimensions of a topic or distorting information . They can also be difficult to capture or create, and the exact ways in which they work are still not properly understood . There is much to learn about the effects of narrative and the conditions needed to maximize their usefulness . For instance, how close must the match be between a story’s characters and the audience of interest? How do real-life personal stories compare to artistic, fictionalized, or composite narratives? What

This article was adapted from a paper entitled “Narrative Communication in Cancer Prevention and Control: A Framework to Guide Research and Application” by Dr Kreuter et al., School of Public Health, Saint Louis University, United States of America

Bloom April 2008

8

Our dear friend Irina K o z u l i n a ,

the regional represen-tative for RRI in Eastern Europe, has died of breast cancer .

When she first re-ceived her diag nosis of breast cancer in 1997, Irina was working full-time as a mathematician at Minsk University . At the same time, her hus band Aleksandr Kozulin was entering

into politics in Belarus . Battling cancer, handling chemo-therapy, and helping her husband navigate the Belarusian political landscape was a little too much for one person to handle, so Irina left her job at the university and dedi-cated the rest of her life to activism .

While working with her husband in politics, her personal experience of breast cancer convinced her that she also needed to help other women in her situation in Belarus and beyond . After training as a volunteer, she formed an organization called Rays of Hope, promoting the RRI strategy in Belarus – a difficult task, as it took time to learn how to raise awareness of breast cancer, bring

women together and work with the government health-care system . Shortage of funds was a challenge, but Irina had energy to spare .

In 2006, Irina’s husband was sentenced to five and a half years prison for organizing mass protests against a presidential election widely seen as rigged . While appealing internationally for his release, Irina kept up her own work: she co-organized an international breast cancer conference in Minsk in September 2007, and obtained permission from the Belarusian health-care system for volunteers to visit breast cancer patients in hospitals in Minsk .

By then, she knew her time was limited . She lived the last months of her life trying to prove by her own example that life with cancer can be rich and fulfilling, and that cancer cannot take the spirit and motivation from a person .

“The fact of illness is not a reason for self-isolation,” Irina wrote in her book on her struggle with breast cancer . “I believe that life should go on, and that illness is not a good reason to disturb its course . It is necessary to try in all cases to do everything you can so that those around you continue to live a full life . And you should also live a full life .”

Irina never finished her book . She died on 23 February 2008 . Following national and international protests, her husband was freed for three days to attend her funeral .

Obituary Volunteering & training

“Goodness me, all you people look so healthy and normal . Anybody who didn’t know you before would never imagine you are breast

cancer survivors!”

This remark came from a commentator on a Uganda Television News bulletin featuring 25 breast cancer survivors attending a two-day Reach to Recovery training on 13-14 October 2007 in Kampala . The training was conducted by RRI President Ann Steyn, with help from Angelika Alberts, Chairperson of Reach to Recovery Stellenbosch/Somerset West, South Africa . Two Ugandan senior breast cancer surgeons and an oncologist from the National Referral hospital complemented the session .

Unfortunately, the commentator’s heartening observa-tion reflects a generally held attitude that being diagnosed with cancer (and breast cancer in particular) is synonymous with a death sentence . This fear is based on the low levels of cancer awareness and high breast cancer mortality rates in Uganda, where 75% of women who are treated for the

disease die within two to three years .

The commentator’s remark underscores the challenges that lie ahead for the Uganda Women Cancer Support Organization (UWOCASO), whose aim is to “create awareness about breast cancer so that women can adopt practices of breast self-examination and routine mammo-graphy, and present early for treatment” .

Given UWOCASO’s broad objective, the training was extremely valuable . As trainees, we learnt that we are part of a wider global community that seeks to transform our painful experience of breast cancer into a useful tool to help fellow women undergoing a similar experience . Al-though each of us had already been supporting women with breast cancer and their family members, the training gave us the skills and approaches to improve our methods of work .

By applying the lessons learnt from the variety of topics covered during the training session, members will build self-confidence in their work of supporting affected

Obituary: farewell to Irina Kozulina

Volunteering & training“You look healthy and normal”

aspects of narratives are most important when addressing emotional and existential issues? Answers to questions like these will help researchers better understand if and

how narratives can help individuals and families face the uninvited challenges of life after a cancer diagnosis .

Bloom April 2008

99

Volunteering & training

women and their families . This will in turn contribute to raising awareness about the importance of early breast cancer treatment – not only among women, but also within the general population . In addition, members’ self-confidence will contribute to reducing the stigma that surrounds breast cancer . All societies cherish women’s breasts, but in Uganda some people and communities actually regard mastectomy as a curse to the individual and the family . Remember, due to late presentation, breast reconstruction is rarely performed .

Trainees were given medical information on various topics, and handouts that can serve as reference materials . We were also advised to use these materials with maximum caution due to our lack of medical training . Such advice re-emphasized the importance of the social and supportive role that survivors play in reaching out to fellow women . Sharing personal coping experiences among trainees and trainers brought out the oneness that is needed to bind us together as we strive to educate and reassure women in need .

A month after the workshop, trainees met and formed an executive committee . The group got together again on 19 January 2008 in order to rededicate ourselves to the task of supporting and educating women on breast cancer . Some of the members demonstrated prompt action – for instance, the sewing & prosthesis group brought hairpieces and wigs to lend to women in need .

The group plans to start patient visits in the national referral hospital Mulago, where UWOCASO is well known and some members have already been counselling inpatients . Another target will be Kampala International Hospital (KIH), whose Hope Ward offers treatment to very needy patients free of charge . We have already been

referring women there, and our members participated in a Charity Walk to raise funds to support Hope Ward patients . Initial visits will involve meeting hospital authorities to agree on how best to go about the work .

Meanwhile, to complement patient visits and counselling work, members will continue to meet and talk with women’s groups and girls in higher education . We will also keep up ongoing activities, such as radio and TV talk shows, UWOCASO public talks, networking with like-minded organizations, and participation in national forums on breast cancer advocacy .

On behalf of UWOCASO members, I would like to extend our deepest appreciation to Susan G Komen for the Cure for funding the Kampala training programme . We are determined to ensure that this training benefits all Ugandan women in need of breast cancer support .

Speciosa Kabwegyere, chairperson, Uganda Women Cancer Support Organization

The Tanzania Breast Cancer Foundation is a young organization created in August 2006 with the aim of supporting breast cancer patients, survivors and

their families . The Reach to Recovery training held in Nairobi on 24-25 November 2007 was timely for us at this early stage when we are building on our services to improve the quality of life of women with breast cancer in Tanzania .

Building the capacity of a young organization

The training was a real eye-opener: it made us realize the crucial role that we, breast cancer survivors, can play by reaching out to newly diagnosed patients at their time of great dis-

tress and need . It equipped us with the skills to comfort women, build their confidence and self-esteem, and give them hope .

We were highly motivated by the exposure to the very active Kenyan Breast Cancer Programme and Kenya Reach to Recovery . At the training we met very young breast cancer survivors who inspired us to be more aggressive in

Bloom April 2008

1010

News from around the world

our campaign to get young women to take action on breast self-examination . We are now planning to visit schools and universities and break the barrier of silence and tell the whole country about the importance of early detection through radio and TV .

In time, we expect that many more survivors in Tanzania will use their experiences to help others by joining us in our quest to care, share and give HOPE .

Angela Kuzilwa, executive director, Tanzania Breast Cancer Foundation

India’s Cancer Patients Aid Association (CPAA) gives lectures in schools, colleges, offices, factories and residential areas across the country, working to remove

myths and misapprehensions about breast cancer and to encourage early detection . Communicating about breast cancer is a complicated business in India, where there are 25 official languages . CPAA has been working in Hindi, Bengali, Gujarati and English for some time already, and we recently initiated a programme targeted at Marathi-speaking women in Maharashtra state . We felt that local women needed an added push to attend our early detection camps and clinics, so we enlisted local language papers to organize and disseminate information about a series of open forums organized at various locations in Mumbai .

The first such forum was organized in association with Marathi newspaper Loksatta during breast cancer month on 14 October 2007 . We placed announ cements in supporting newspapers, dis-tributed leaflets in neighbouring buildings, and encouraged local women’s groups to advertise the event . Word of mouth did the rest .

Women from all kinds of backgrounds and economic strata attended the forum . Many

women brought their maids! We had invited Dr Rajendra Badwe, professor of surgical oncology, to speak about the signs, symptoms and treatment of breast cancer, and gynaecologist Dr Mandakini Purandare shared her experiences of CPAA camps and early detection clinics .

Reaching Marathi-speaking women in India

News from around the worldInflation, hope and pink tutus (Zimbabwe)

Reach to Recovery has struggled through a difficult 2007 in Zimbabwe, where inflation is the highest in the world and the population is crippled by

power, water and fuel shortages and the biggest food crisis this country has ever seen . Given this context, we decided we all needed a bit of light relief, so we invited people to “Join the Pink Party” . The purpose was twofold: to raise breast cancer awareness, and to raise funds for our training programme to be held in May 2008 .

The party was a huge success . Dr Nancy Jonker gave a personal testimony . There was a wonderful array of pink saris and dresses and flamboyant hats, and the food was truly amazing – here in Zim, we are adept at foraging: we borrowed eggs, sugar and flour and laid out a feast of delicious treats . People commented: “Who would believe we have a food shortage?” We had raffles and auctions, and a group of men dressed in pink tutus stole the show with their hilarious version of Swan Lake . Laughter is a tonic that we have a special need for in Zimbabwe .

On a more serious note, we are currently offering emotional support to 125 ladies here in Harare . Under normal circumstances, we would be working alongside a

fully functional medical system . However, chemotherapy is not always an option in Zimbabwe as patients can no longer afford it – or tamoxifen for that matter . Besides, tamoxifen is in seriously short supply here, as are most drugs . There is rarely a radiotherapy machine up and running and, basically, treatments are financially out of reach or not available . These are extreme circumstances for everyone to deal with and survive through .

After Jahan Mahomed and Jacquie Gulliver attended the Reach to Recovery Asia Pacific conference in Mumbai in November 2006, we received a generous donation of post-surgery soft foam prostheses from Cancare, Singapore, and our newly diagnosed breast cancer ladies are leaving hospital feeling more confident and balanced .

Exciting news for our organization: we are expanding and welcoming our sister town Bulawayo on board . The Bulawayo group, which had been operating on its own already, will add a valued dimension to Reach to Recovery Zimbabwe . Our organization continues to make a big difference here in Zimbabwe .

Toni Eager Chairperson, Reach to Recovery, Zimbabwe

Bloom April 2008

1111

News from around the world

For ordinary Ethiopians, cancer is a deadly disease without a cure . This misguided belief is attributable in great part to the lack of cancer advocacy work

in the country . Only a handful of urban, educated wom-en are knowledgeable about breast self-examination . But lack of knowledge is not the only issue: insufficient avail-ability of essential medicines, inadequate health facilities and a lack of trained medical personnel are major problems here . It is esti mated that only 51 percent of the popu lation have access to health facilities .

How do you address breast cancer in this difficult context? The Mathiwos Wondu Ye Ethiopia Cancer Society (MWECS) has been working hard to fill the know-ledge gap and change people’s attitudes . After establishing a fundraising com-mittee to finance activities, MWECS implemented Inter-national Breast Cancer Awareness Month for the first time in 2007 . We decided to organize a Walk for Life event that would inform a local crowd about breast cancer and would be covered widely in Ethiopian media to reach dis-tant audiences .

Walk For Life was held on 28 October in Meskel Square in Addis Ababa . More than 800 people took part, including the Mayor of Addis Ababa and high-level representatives from the Ministry of Health . 38 women who had gathered

for the World Miss Tourism contest also lent their beauty and voices to the event, actively sharing their experiences and knowledge of breast cancer . Ethiopia’s only senior oncologist briefed the crowd on cancer in general and breast cancer in particular, and the question and answers session that followed helped to make this one of the

most inspirational and educational events we have seen . MWECS also distributed tutorial pamphlets on breast cancer risk factors and self-examination in Amharic and English .

Walk For Life was written up in almost all daily national newspapers, including “Addis Zemen” and “Ethiopian Herald”, as well as several weekly private newspapers . Organizers and par-ticipants were very much encouraged

by the outcome of the programme, and felt their moti-vation strengthened for further activities . Ongoing and future plans for the society include organizing an annual Walk For Life event; promoting public awareness of can-cer risk factors and prevention messages (nutrition educa-tion, phy sical exercise) through TV, radio and newspapers; pushing for a restriction on public cigarette smoking; and securing essential medicines for cancer and other diseases from local and foreign donor agencies .

Dr Wondu Bekele General manager, Ethiopian Cancer Society

Kuala Lumpur was the venue for a rather unusual event in September 2007: in front of an audience of 150 women sipping afternoon tea, a selection of

bachelors paraded down a catwalk and “sold” themselves in an auction . All for a good cause, of course . This original event, organized jointly by Soroptimist International Petaling Jaya and the UK Women’s Alumni Network, aimed to boost breast cancer awareness in Malaysia and raise funds for the Breast Cancer Welfare Association

(BCWA), the local Reach to Recovery group .

The fourteen high calibre bachelors (all volunteers recruited through friends) included a restaurateur, a pilot, a fashion designer, a doctor and a journalist . The auction was conducted by a professional auctioneer, and the men performed a variety of tricks to gain the bidders’ attention: playing the violin, decorating cup cakes, striding model-like down the catwalk, and selling hugs and kisses .

Walk for Life in Ethiopia

Kisses for sale in Malaysia

Our chairman and CEO YK Sapru spoke about our association’s activities, and CPAA’s Neeta More followed up with an interactive session .

Bollywood actress Renuka Shahane-Rana was the main star of our programme, however . She spoke about her personal experience supporting her mother, a breast cancer survivor . It was not the first time that CPAA had enlisted a big name to help publicize an event – we have learnt from experience that both media and the general public are more forthcoming when there is celebrity involvement .

Since then, CPAA has organized five similar forums in distant Mumbai suburbs, with huge attendance and

dynamic question-and-answer sessions . At all events, we distribute pamphlets with information on location and timing of our free early detection clinics, and many women have subsequently shown up at the clinics . We have two clinics at central locations in Mumbai where people can come in three days a week to get free screening for oral, cervical and breast cancer, with referrals to a surgeon if a problem is detected . We also arrange camps at locations where the risk of finding people with cancer is high .

Dr Shubha Maudgal Director, India Cancer Patients Aid Association

Bloom April 2008

1212

News from around the world

Hugs went for MYR10 (US$3), while kisses fetched a princely MYR50 (US$15) . Meanwhile, the glamorous spectators lunched, laughed and outbid each other for their favourite bachelor, amid catcalling and cheers .

The event raised funds for BCWA as well as time from the men, who each agreed to undertake 16 hours of community service over a few weekends at selected orphanages and nursing homes . In total, MYR80,000 (US$ 25,000) was raised .

Programme books containing a write-up about BCWA and a message from our vice-president were left on each table, as well as our association’s annual activity report . Members of the media were contacted before the event, and given the opportunity to interview a breast cancer survivor and the vice-president of our association . The auction was featured in newspapers, TV news and talk shows, and the buzz created by this innovative idea was a tremendous boon to breast cancer awareness issues and to our Reach

to Recovery group . Added to this was the stir it caused among the men-folk in the city – breast cancer messages finally reached them! Fired up by this success, we are planning a similar event for 2008 .

Barbara Khoo (Reach to Recovery Malaysia) Executive director, BCWA, Malaysia

Four thousand women are diagnosed with breast can-cer every year in Portugal . Although breast cancer is considered very much a “woman’s business”, every

one of these women has a husband or partner, or a son, or a male friend who suffers through the illness with them .

On 30 October last year, the Portuguese Reach to Recovery Group “Vencer e Viver” (Conquer and Live) inaugurated a media campaign, “Men also suffer”, for husbands, sons and friends or colleagues of women diagnosed with breast cancer . The campaign aims to raise awareness of these men’s experience with breast cancer,

and to help them cope with common feelings such as shock, anger, distress, feelings of helplessness to solve the problem, anxiety and psychic pain . Our goal was also to offer men help at an emotional level, with practical tips for coping with their own situation as well as helping the women they love in this difficult period of their lives . We wanted to show men that they are not alone, that we realise that they also face many difficulties, and that there is a support group out there that can help them cope with their feelings and the disease of their loved one .

The campaign involved the distri-bution of posters and brochures in hospitals and health centres where women are treated for breast cancer, as well as several regional centres of the Portuguese League against Cancer

and Vencer e Viver groups all over the country . In parallel, we created men’s support groups facilitated by psycho-logists and information sessions in Vencer e Viver’s Lisbon office where men can drop in after working hours . We also developed a website (www.elestambemchoram.com) intended as a resource for men affected by the disease of their loved ones, and a place where they can start a dialogue amongst themselves .

Maria Cunha Matos Vencer e Viver, Lisbon, Portugal

Men also suffer (Portugal)

Bloom April 2008

1313

News from around the world

Mammography is a valuable tool to reduce breast cancer mortality, but in many countries, screen-ing cannot be implemented due to economic

reasons . Fortunately, clinical breast examination and breast self-examination, used separately or in combination, have proven to be very effective . In a trial in the United States, clinical examination was found to be as effective as mammo graphy, and in Finland, the Mama Programme study found a significant reduction in mortality among women using breast self-examination .

The Finnish Mama Programme, which ran from 1973 to 1975, followed a cohort of 56,177 women, and involved group-based oral instruction, follow-up of self-examination performance with personal Mama calendars, and self-referral arrangements for women who had detected symptoms . Results showed that women’s fears of breast cancer diminished thanks to the programme, and awareness of, and motivation for, monthly self-

examination increased from 2 to 55% . Among self-examination compliers, there was a 20% increase in incidence and a 29% reduction in mortality from breast cancer in women of 25 years and up .

Given this success, the Mama Programme is now imple-mented voluntarily in the Finnish public health care system and doctors’ offices . To date, the programme has reached more than one million women .

The Mama Programme would be particularly relevant for low-income countries where screening options are limited or non-existent . The written materials aimed at health pro-fessionals and the women enrolled in the programme have been tested and implemented in Finland and several other countries . Mama Programme working aids for training, instruction and follow-up are available in Finnish and can easily be adapted to different languages and cultures .

Dr Gisela Gastrin, Mama Programme, Finland

The Finnish Mama Programme

First Annual Breast Cancer Conference in Abuja, Nigeria

Asociación Salvadoreña Para la Prevención Del Cáncer (ASAPRECAN)

The Salvadoran Association for the Prevention of Cancer is a non-profit NGO that aims to fight cancer through edu-cational activities and prevention programmes, and provide support for cancer patients and their families .

Patient’s Friends Society – Jerusalem (PFS) /Sunrise Group

PFS is a Palestinian NGO which provides public health services for Palestinian women . In 2000, PFS founded

Sunrise, a breast cancer survivors’ group that runs a Reach to Recovery project in East Jerusalem and the West Bank . Visit their website for more info: www.pfsjerusalem.org

Amazon HeartAn Australian peer support organization for women with

breast cancer, Amazon Heart provides a range of adventure events tailored to women’s interests and age groups . Their activities were the subject of a focus article in Bloom’s last issue (Nov 2007) . Visit their website for more information: www.amazonheart.org

Announcements New RRI affiliate members

Announcements

In Africa, as in the rest of the world, breast cancer is a major issue . To increase awareness of the

disease burden on African societies and exchange best practices, Nigerian NGO Princess Nikky Breast Cancer Foundation organized the first Annual Africa Breast Cancer Conference in Abuja, Nigeria, on 18-19 March 2008 .

The objectives of the conference were to increase awareness and understanding of breast cancer, scale up education programmes, and discuss opportunities for patient assistance programmes and breast cancer research and clinical trials in Africa . The conference, which was sponsored by Novartis Oncology, was attended by over 200 breast cancer survivors, advocates, scientists and health professionals .

Highlights included RRI President Ann Steyn receiving an award for her excellent work developing the RRI Breast Cancer Programme in Africa, and Nigeria’s vice-

president launching the “breast health education training manual for Africa”, developed by the Princess Nikky Breast Cancer Foundation .

Prior to the conference, the Princess Nikky Foundation and RRI Nigeria organized a tour of Abuja’s National Hospital, where Ann Steyn and other conference delegates learnt about breast cancer treatment options in Nigeria and inter acted with breast

cancer patients and hospital staff . To help disseminate breast cancer messages among the general population in Nigeria and neighbouring African coutries, Voice of Nigeria aired an interview of Ann Steyn by Princess Nikky Onyeri, the founder and executive director of the eponymous foundation .

The next Annual Africa Breast Cancer Conference will be held in Egypt on 16-17 March 2009 .

Princess Nikky Onyeri, executive director, Princess Nikky Breast Cancer Foundation

Bloom April 2008

14

Reach Down Under for the latest in breast cancer supportive care!

It is my pleasure to formally invite you to the 15th UICC Reach to Recovery International Breast Cancer Support Confer-

ence, which will take place in Brisbane, Australia, in May 2009 . The theme of this conference is “One Journey, Many People”, and we want you to make the journey to be with many others from all parts of the world, who have experi-enced breast cancer .

14

One Journey Many People15th UICC Reach to Recovery International Breast Cancer Support Conference, Brisbane, Australia, 13-15 May 2009

Film festival “Reel Lives: The Cancer Chronicles” Geneva, Switzerland, 28-30 August 2008

Conferences & Events

Since 1933, the UICC World Cancer Congress has been bringing to-

gether the world’s leaders in the fight to control cancer . This year, we will meet in

Geneva, Switzerland . One of the major strengths of the Congress is the diversity of cultural representation (125 nationalities in 2006) and delegates’ professional back-grounds, and the breadth of topics covered, ranging from cancer prevention to palliative care . So wherever you are, and whatever your profession and field of expertise, par-ticipating in the 2008 World Cancer Congress will be an enriching experience .

The programme is now available online . Sessions of interest include: “Breast health care in low- and middle-income countries”; “Controversy: mammography screen-ing – real benefits or a burden on the citizen?”; “Breast

cancer screening”; and “One-stop shop in breast patholo-gies” .

Every day will start with dyna-mic and interactive “ Challenge your Expert” sessions . And targeting future genera tions of cancer specialists, a forum for medical students and nurses will run parallel to the main programme over the course of two mornings .

Early bird registration is open until 28 April 2008, so don’t miss the opportunity to join this event at drastically discounted conditions .

Visit us now at www.uicc-congress08.org or email us at secretariat08@uicc.org

Conferences & EventsTowards True Cancer ControlUICC World Cancer Congress 2008 Geneva, Switzerland, 27-31 August 2008

Over 100 films have already been submitted to the inaugural “Reel Lives Film Festival: The Cancer Chronicles”, which will take place 28-30 August

during the World Cancer Congress in Geneva .

Because of their visual impact and ability to pull people into a story, films are a fantastic means of communicating and educating . By harnessing the power of film, Reel Lives aims to shatter taboos and myths surrounding cancer, educate and enlighten people around the world, bridge cultural divides, and help unite the global cancer community .

Documentaries have been sent in to the festival from destinations as diverse as Brazil, New Zealand, France, Japan, Israel, Canada, India, Croatia, Scotland, Malay-sia, Germany, Uruguay, South Korea, Finland, Italy and the United States . Some of the films submitted tackle subjects as universal as cancer in the workplace, or how parents and siblings process cancer, while others focus on very specific topics such as early detection and treatment

for Native Peoples in Alaska and Hawaii .

Feature documen-taries, short pro-grammes and public service announce-ments will all be com-peting for a grand prize of US$10,000 . The awards will celebrate films that are thought-provoking, educational and inspirational .

If your life has been touched by cancer, Reel Lives is an opportunity for you to tell your story through the medium of film, and to be heard by a wide audience . Time is running out to submit, so send in your cancer-related documentaries to Reel Lives before the 1 May deadline!

The festival’s lead sponsor is the oncology division of GlaxoSmithKline .

For more information, visit www.reallives.org

Bloom April 2008

15

Take Off Your Party Dress by Dina Rabinovitch

When journalist Dina Rabinovitch was diagnosed with breast cancer in September 2004, she didn’t know a thing about the disease . By the time of her death in autumn 2007, she was an expert . Her experience of the condition and its treatment, from diagnosis through mastectomy to remission and reoccurrence,

is recounted in this down-to-earth memoir, covering everything from trialling the latest anti-cancer drugs to what to wear that’s stylish after surgery . Warm, lively, irreverent, Rabinovitch’s brave story of juggling a hectic career and a large, extended family while living – and dying – with cancer is essential reading .

Brave faces by Nasra Al AdawiThis collection of poems and prose by Omani poet Nasra

Al Adawi is published in tribute and honour of the African women she has met who have lived through breast or cervical cancer .

Making the Breast of It (overcoming fear of intimacy after mastectomy) by Lea Yekutiel

Metaphysics and spirituality teacher Lea Yekutiel recounts how she over-came her own fear of intimacy after mastectomy, and became a stronger person because of her experience . This book is a how-to guide to learn to accept yourself completely and

enjoy feeling like a whole woman with one breast or with none . Visit the author’s website for further information: www.ilovemybreastcancer.com

Cancer Vixen by Marisa Acocella MarchettoMany thanks to Marisa for allowing us to feature her

funny, moving and inspirational cartoons in this edition and future issues of bloom! Her graphic breast cancer memoir, which was reviewed in the last issue of bloom (November 2007), is now available in French and Spanish from Amazon .

Books

15

Conferences & Events

Poetry

Books & Poetry

The conference, hosted by the Cancer Council Queens-land, will be the first worldwide forum for breast cancer consumers, support organizations and health professionals to meet and address common goals .

Breast cancer is a global issue and over the years it has been consumers, women themselves, who have led the

movement to ensure the provision of adequate and appro-priate services and supportive care for those diagnosed and treated for this disease . Through its peer support and advocacy activities, the Reach to Recovery International movement has played a unique and important role in acknowledging and celebrating the power of shared personal experience .

This conference promises to be not only empowering and informative, but exciting, inspirational and fun . So please join us in Brisbane, Australia in May 2009 – to learn from each other, to share experiences, and to strengthen and build networks .

Professor Jeff Dunn, CEO, The Cancer Council Queensland

Brisbane, Australia www.reachtorecovery2009.org

My experienceMy friends and relatives were standing tenderly beside me .Their faces were drawn by anxiety . I look at them and feel like carrying their burden too .Doctors are polite but taciturn; Nurses come and go hastily .And then, the volunteer came to me . She sat beside me and all the sun was shining on her face . She took my hand and said warmly:Fear not, nothing is lost, we can fight this battle!Until then I was at the bottom of a deep well Her words were a sturdy ropeI grasped it and started to climb towards salvation .

Angeliki Sarandakou Volunteer of “Alma Zois”, Panhellenic Association of Women with Breast Cancer

Bloom April 2008

1616

Name of person nominated: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Organization: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Address: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Telephone: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Email: . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .Tick the region to be represented

Mission Statement Reach to Recovery International

About UICC

UICC is the only international non-governmental organization dedicated exclusively to the global control of cancer . Its vision is of a world where

cancer is eliminated as a major life-threatening disease for future generations .

Founded in 1933, UICC is an independent association of almost 300 member organizations in over 90 countries . Members are voluntary cancer leagues and societies, cancer research and treatment centres and, in some countries, ministries of health .

Donate now to save livesTo support our work, visit the UICC website (www.uicc.org)

Reach to Recovery International is a programme of the International Union Against Cancer (UICC) . It is built on a simple yet universal principle: a woman

who has lived through breast cancer and gives of her time and experience to help another woman confronting the same experience is a valuable source of support .

Reach to Recovery International is committed to working to improve the quality of life for women with breast cancer and their families through a wide range of services offered worldwide .

REMINDER - RRI is still accepting nominations for regional representatives at the new executive committee

Bloom is published twice yearly by the International Union Against Cancer (UICC) .

If you would like to know more about Reach to Recovery International or would like to order additional copies of bloom, please contact:

UICC . International Union Against Cancer 62 route de Frontenex 1207 Geneva Switzerland Tel +41 22 809 1811, Fax +41 22 809 1810 bloom@uicc.org, www.uicc.org

UICC is grateful to Bristol-Myers Squibb for its support of RRI activities,

including bloom.

Our logo:The curved lines symbolize the outline •of a breast .The multiplicity of lines signifies that •we are many .The interlocked lines symbolize •community .The open-ended lines signify our open •arms to all women worldwide .

Criteria required: leadership skills, vision, and commitment, member of an RRI groupPlease email your suggestion for nomination to rri@uicc.org or fax it to +41 (0)22 809 1810

c North Americac Central America and Caribbeanc South Americac Western Europec Eastern Europe

c North Africac Sub-Saharan Africac Middle Eastc Asiac Far East and Australasia

Name of person or organization nominating ______________________________________________________________Telephone number__________________________________Email ____________________________