17th RRI day 3 newsletter

NEWSLETTER - DAY 03 FRIDAY 22th MARCH

Retiring president Ann Steyn hands over to new RRI president Cathy Hirsch at the closing ceremony of the 17th RRI in Cape Town

Ringing in the new W

ith the ringing applause of African drum sticks, delegates at the closing session of the Reach to Recovery International conference in Cape Town said goodbye to the retiring president Ann Steyn, and welcomed in Cathy Hirsch, who will be taking over the reins.

Hirsch - a 10-year breast cancer survivor and longtime American Cancer Society (ACS) volunteer - is a trained attorney and former journalist from Baltimore in the US who joined the ACS as a Reach to Recovery volunteer in 2007, after recovering from stage 2 breast cancer.

“Cathy has used her personal experience with breast cancer as motivation to help others faced with this disease,” Gary M. Reedy, volunteer board chair for the ACS said in a statement released by the organisation after the announcement. “She is a testament to the strong, global grassroots force that moves the American Cancer Society forward in the fight against cancer.”

The Volunteer of the Year Award went to the retiring president, Ann Steyn, for her consistent efforts to support and empower women with breast cancer, not only in South Africa, but all over the African continent. In her time with the RRI Steyn wanted to address the unique challenges faced by African women that caused so many cancers on the continent to only be detected in stage 3 or 4, leading

By WILMA STASSEN to much suffering. So she arranged for volunteers from 14 African countries to be trained and launch the Reach to Recovery campaigns in the different countries around the continent.

For the first time in the organisation’s history the Threse Lasser Award was given to a volunteer posthumously. The late Mary Onyango from Kenya was given this prestigious award. Onyango was the founding member of the Reach to Recovery programme in Kenya whose lobby and advocacy led to the establishment of a National Task Force and Programme for Breast and Cervical Cancer. Onyango, who was initially also involved with the organisation of the RRI conference sadly passed away last year.

The last award, the Health Professional Medal, went to the Cape Town surgeon, Dr Jenny Edge, for her involvement in breast cancer education among health care workers and her dedication to patients, and advocacy efforts around breast cancer.

In the closing ceremony, the local organisers, Salome Meyer, Dr Jenny Edge, Linda Greef and Colleen Marco were thanked by the RRI for arranging such a well-organised event.

Breast cancer has changed me for the better T

here is only one way to describe Christelle Strauss - that is driven.

The 58 year old breast cancer survivor and chartered accountant has shown the same determination in overcoming her disease as she did when made a decision to become a property developer in Barberton. With no experience, armed with a good idea and a vision, she bought land in Barberton, put in services and is developing these into residential properties. No mean feat particularly when entering into what is predominantly a ‘man’s world’.

Christelle was commuting between her home in Benoni to Barberton each week at the time when she discovered the lump in her breast. “I waited until my next gynae appointment and he sent me straight next door to the surgeon.” She was sent straight for a biopsy and, without knowing the result, returned to Barberton to continue her project. Then the surgeon phoned and said she wanted to see her ‘urgently’. Christelle was told that she would need the 3.5cm tumour ‘scooped out’ and went into theatre on the 14 December 2004. “The surgeon told me when I woke up that I shouldn’t be alarmed as I would have drains in my chest and explained what they were for. When I woke up I immediately checked and was surprised and then alarmed to find no drains. All there was, was a little plaster... I was not relieved – I knew something was not right.”

Very soon afterwards the surgeon came and said to the nurses ‘nil per mouth, Christelle is going back to theatre.’ “He explained that when they had opened up my breast they discovered it was riddled with cancer and I would have to have a mastectomy.

Christelle did not tell Christelle Strauss her son,

By KATHY MALHERBE Dewald and daughter, Marlene.

She arranged for someone to take care of her 90 year old mother who was living with her and phoned her children to say she would be ‘working late.’ This is a decision she regrets enormously. They were deeply, deeply upset that I hadn’t told them and they still have an issue around trust. My advice, in retrospect, is not to keep it from your children – they have a right to know and need to know.”

She does however, say her mom went to her grave without knowing about the cancer – “It would have upset her too much,” she says.

The surgeon could only operate late that evening so at 10pm Christelle went into theatre for the second time that day to have a mastectomy. “The next morning I woke up and had all drainage pipes I had been promised! I checked myself out of hospital and drove home. Then I had to face telling my children. It was a tremendous shock for them – I will never forget their faces and that was 9 years ago….”

Despite starting chemotherapy in February the next year, Christelle continued to drive the 350km twice a week to Barberton to continue her development project. “I had to… I had the feeling that the municipality of Barberton thought of me along the lines of ‘that old woman from Benoni who doesn’t know what she is doing.’ I was determined to prove them wrong… And she has. To date she

The tumor was roughly this size

has built 106 houses in the first phase of the Barberton development and has started the second phase.

The nine sessions of chemo were followed by radiation followed by five years of Tamoxifen. She chose not to have reconstruction saying she did not feel the need. “I was small breasted anyway and did not want to undergo more surgery.”

Like many survivors, Christelle now volunteers for CANSA and now that she lives in Barberton permanently is the chairperson of the organisation. She says she remembers waking up after her mastectomy and a volunteer from Reach to Recovery was standing there – I knew then I wanted to become a volunteer after my treatment. She says they are trying to initiate a Reach to Recovery in Barberton where survivors will be able to volunteer and help breast cancer patients through their recovery.

What is her message to women?

“Always be honest and open with your family – don’t hide anything to protect them. I am also appealing to women to do a self examination every month at the same time of the month. Don’t wait to go and have yourself checked if you feel something suspicious – go to a doctor immediately.”

She says breast cancer has changed her, “I like the Christelle I now know.

Ten years ago I was harder than I am now and like many people felt the world owed me something. Now I am so grateful for a second chance in life and focus on all the good things.”

Migrant workers don’t have access to top medical care in their home countries

The dilemma of a migrant worker

By KATHY MALHERBE

A

mor, a Filipino migrant worker employed by a diplomat in Switzerland, is facing a dilemma no-one with metastatic breast cancer, or anyone for that matter, should need to face.

Not only is she embarrassed because she is unable to work and send money home to support her family but she has to make a decision as to when to return home to die.

Amor is between the proverbial rock and hard place.

The problem is two-fold. Firstly, as a legal migrant working in Switzerland, she has access to excellent health care – which she will not have in her home country. The second is that she does need to return home to die, as her family cannot afford to get her body from Europe to the Philippines. The question is when does she go?

At 45 years old, Amor is just one of the migrant workers facing the challenges of falling ill while working in another country or far away from home in the same country.

“The challenges around migrant workers falling ill while they are away from home, is a global one and is multi-faceted,” says Thea Marais, health psychologist at the Webster University of Geneva. Apart from a tendency for late diagnosis through lack of understanding and fear of going to doctor, there are a number of other difficulties facing migrant workers. These include language issues when seeking health care, the question of affordability to travel home when they become ill and in the worst case scenario, finding a way to go home to die to save the family the cost of transporting their body home.”

Amor was sent by her family to work in Switzerland so she could earn money to send home to support them.

The diplomats from Malawi for whom she worked, were superb employers and ensured that Amor was registered with all the authorities so had access to all facilities to which citizens of Switzerland are entitled. Not everyone is that lucky.

Amor was happy, earning a decent salary and spent six years bringing up the couple’s children.

When her employers told her they were returning to Malawi, Amor plucked up the courage to tell them she had a lump in her breast and was worried about it. They sent her to a doctor and it was discovered that the lump was in fact so large it had erupted and spread to the glands.

It was not able to be excised so she had a mastectomy in November 2012. But a CT scan in February this year revealed she had metastasis in the lung and liver.

Her saving grace was that when her employers returned to Malawi they were generous enough to continue to pay her medical insurance which allowed Amor to continue with her excellent medical treatment in Switzerland.

Marais, who also works with the English speaking Cancer Association in Geneva says, “even though Amor has the best medical treatment and is well supported by our organisation and other women with breast cancer, she is in essence, alone”.

The English speaking Cancer Association assists patients in Switzerland who are admitted to hospital because says Marais, “The nurses speak French and communication is vital and difficult. We have a bilingual person go into hospital with them and help to make the process easier for them. The stress of being diagnosed with cancer is enough, without struggling with language barriers.’

Marais says the association has created a French/ English Lexicon for all patients. Simple diagrams of various equipment and facilities and medical terms and sentences have both English and French captions – often the only way a patient can communicate with the nurses.

Marais, who worked for CANSA in South Africa before moving to Switzerland says “The problems facing migrant labourers are not unique to Switzerland. In South Africa, we have thousands of migrant workers leaving their families to work in the city and send money home. They face the same problem.”

dancing the night away F

irst paragraph to go here and here and here and here and here and here and here and here.

Second paragraph to go here and here and here and here and here and here and here and here..

focus on the nurses P

rior to the conference, nurses were given the opportunity to attend a workshop facilitated by Dr Jenny Edge and Professor D Woods.

The target group was nurses that are expected to provide breast cancer care service in limited resource settings and breast cancer care nurses.

In many developing countries, nurses run the health centres. With limited resources, they have to deal with many different diseases and patients.

1.

There is a lot of evidence to suggest that patients with breast cancer in developing countries present later than those in developed countries 2.

Although circumstances differ in different countries, there are many similarities 3.

“Cyber learning” has become a reality with most nurses having a cell phone even if they do not have internet access 4.

Nurses have been successfully educated using this technology in the area of neonatology and midwifery. The initiative was co ordinated by Prof Woods.

5.

A breast cancer care course has just been completed at CBMH. 7 nurses: 3 from the provincial clinics, 4 from CBMH completed the course.

K

eziah Rhobi Makoyo – Tanzania Tanzania Breast Cancer Foundation I learnt a lot at the conference, but was particularly useful for me was a talk about lymphoedema and to learn about the breast cancer statistics from all over the world. It was also very interesting to learn how other countries conduct advocacy activities – I will definitely apply that back home.

R

ehema Burton Mwakatobe - Tanzania Tanzania Breast Cancer Foundation I learnt a lot about fundraising and organising, and I will use this information in my own country. Before I came I didn’t know anything about lymphoedema. Now I can use what I learned to help survivors back home.

A

gatha Chmid – Zimbabwe Volunteer What amazed me most was to see cancer survivors helping each other through

By DR JENNY EDGE 6.

After diagnosis and treatment, the clinic nurse may be expected be the counselor as they are often away from the support structures of a cancer unit 7.

Nurses are often asked to run education courses on breast cancer and provide information for women in the community. It is hoped that such campaigns may help dispel myths and lead to earlier presentation.

The one day course was attended by nurses and volunteers from throughout South Africa and from overseas. All participants shared their experience and then discussed the way forward. As a result of the workshop 1.

A cell phone based educational course about breast cancer will be launched 2.

The course will be aimed at nurses working in primary care clinics and deal with the major issues they are faced with.

3.

The course content will include contributions from nurses.

4.

The course content will also available online.

5.

The pre existing lines of communication used by the PEP course will be utilized.

Nurses are put under extra pressure

a multicultural approach. It didn’t stop with colour or creed – all that is important were women, health, and living.

T

ammy Wah – Malaysia Breast Cancer Welfare Association Malaysia (Vice President) I realised that all over the world, but especially in lower- and middle-income countries breast cancer associations face the same challenges – funding, stigma, lack of support, and low political involvement.

S

iow Fei Foong Malaysia Breast Cancer Welfare Association Malaysia Breast cancer organisations are always focussing on early detection, but what I learnt here is that early detection means nothing without early treatment too. Awareness and education is still very important, but we have to work harder to secure access to health care services as well.

Sadly there is a ‘but’...

By KATHY MALHERBE

W

hen Gretha Cook finished telling her story, there was a long silence. Then everyone got to their feet and the room erupted in applause. This is her story…

She started by relating a seemingly frivolous incident.

“About a year ago, my husband Nick and I were invited to a fancy dress party. We don’t normally embrace the prospect of ‘dressing up’ and had the usual misgivings about it. ‘Do we really want to do this? What are we going to wear? Are we going to take back-up outfits to avoid the humiliation if noone else dresses up?’ Then I made the decision, “We have to do this, so we are going to do it properly. We are going BIG.” “Nick went as Elvis Presley and I went as Marge Simpson. The amazing thing was the minute we dressed up, we transformed into our characters.

The evening was a roaring success – we were relaxed and happy in our world.

We had turned a ‘dread evening’ into an unforgettable one just by a change of attitude…

“Less than a year later in 2008, I was diagnosed with breast cancer. A 12cm, lobular tumour in stage 3. I found myself applying the same philosophy as I did for the fancy dress. Did I want cancer? Radiation? A mastectomy or chemo? The answer was of course, No. So I ‘went big and dressed up.’ So started my journey with breast cancer.

“The tumour was so large they I had to have chemotherapy to shrink it before they could operate after which I had a mastectomy, radiation, reconstructive surgery and was put on Zolodex and Tamoxifen for five years.

“During my treatment, I decided to regard it as a short term dilemma and brought humour into my healing. At no point did I NOT take my cancer seriously but I knew that humour is a great healer and if you can laugh in the face of cancer –you don’t cede ownership of yourself to it.

“One thing I discovered I not a wig person – the kids loved my wig though and it was definitely put to good use. I realised I am not defined by lack of hair or a missing

breast so I relaxed, which made people around me relax. I gained a quiet sense of confidence and despite losing my hair and a breast I was at ease and content with myself.

“The funny thing was that cancer was the best thing that happened to me. It made me slow down. Re-assess my life, who was around me and what was around me. It restored my faith – I gave up control and found sweet relief.

The love and support around me was incredible.

“My husband is my staunchest supporter and my parents were fantastic – my mom went to every session of chemo with me.”

At end of 2010 when Gretha was given the all clear, she decided to give some of the love, care and support back

to others. She started to give talks at corporate events and women’s functions and came to the shocking realisation that regardless of age, social status and education, women either don’t check their own bodies or they ignore changes in their bodies. Partly, because they are scared and don’t know how to deal with it and also because they are often too busy caring for others to focus on themselves.

“I continue to play an integral part in educating and helping women who are scared or frightened – because that support helped me in my healing.”

Sadly there is a But …

“In November last year, they discovered my cancer had metastasised to my ovaries and it was diagnosed as stage 4. The second diagnosis knocked me off my feet – the wind out of my sails. I have been battling with it coming back so very, very, soon.”

The most difficult part has been other people’s reactions.

“It makes it very difficult. The first time I was diagnosed everyone told me ‘not to worry you will be fine.’ Their reaction is so different now. You can see it in their eyes - the fear and pity and you can see they have lost hope.

Sometimes I long for the sometimes annoying positivity I experienced when I was first diagnosed. I have found myself anticipating death and being enveloped in sadness for my husband and my children.”

She says, “I battled to see light”.

Then she straightens up and says “somehow I have got back into ‘fancy dress mode’. Allowing myself to believe I am going to die is the easy way out.

I had to go through a major cognitive re-structuring and change my attitude.

They say, ‘Attitude is a little thing that makes a big difference,’ so I said, “Girl you have to get out there and beat this thing. After all my previous encounter with cancer brought me more blessing than sorrow.

“I believe. I have every confidence.

You may see me struggle But you won’t see me fall Regardless if I’m weak or not I’m going to stand tall…”

We have no doubt you will, Gretha, no doubt at all…

History in the making

By SUE SEGAR

A

historic breakthrough. That’s how key stakeholders in breast health in South Africa described a meeting with the Health ministry on March 21, Human Rights Day. The significant outcome of the meeting – attended by deputy health minister Dr Gwen Ramokgopa and other departmental staff – was that Ramokgopa has invited breast cancer stakeholders to contribute to a strategy document on cancer that will be announced on April 7 by the department of health.

“The strategic plan will be launched on April 7 – World Health Day – and it is almost ready for publication, but I can commit to give you another ten days … as we go to print on April 1 … to look at it and see if you can make contributions,” Ramokgopa said during the meeting.

“It was very historic because it was the first time we have ever succeeded in bringing together all breast health stakeholders into one room to talk to the deputy minister and other members of the department,” said conference coordinator Salomé Meyer.

“We had clinicians – including breast surgeons, radiologists, plastic surgeons, geneticists and pathologists, as well as the full range of breast health NGOs and members of the government and civil society as well as international agencies all in one room,” she said of the sometimes heated breakfast meeting which lasted more than two and a half hours.

“It was also a historic breakthrough in the sense that it was Human Rights day, so from the human rights perspective it was the right time and appropriate, because breast health is very much a gender issue. “ Meyer said the purpose of the meeting was for breast health advocates to lobby the national department of health and the ministry for a sustainable and equitable breast health policy for South Africa.

“The problem that we have currently is that there is a disparity in terms of services rendered from one province to the other. So we are asking for equitable services whether that be in terms of clinical practise, diagnosis or treatment.

Even the drugs which are used are not the same from province to province.

Among the issues highlighted in the meeting was the lack of integration of services, the lack of psychological support services, and the lack of lymphoedema services despite the world health guidelines indicating it should be a service available.

“We have no lymphoedema services available for our patients in the state sector,” Meyer said.

Additional issues were the “very desperate need” to include palliative care as part of the service continuum, she added.

“Palliative care currently is only provided by one NGO, namely hospice, and there is no way that hospice can deal with all the patients. Thirteen percent of their patient load is currently made up of cancer patients - and that’s just a drop in the ocean as there are many people in rural areas who do not get this service and end of life is particularly an issue because it is a taboo we don’t talk about.”

Meyer said the meeting was organized by Reach To Recovery International to serve as a model for other lower-resourced countries in terms of advocacy and lobbying for breast health policies.

“International experts were invited along with our own South African stakeholders.

Meyer said the group’s immediate action, following out of the meeting, would be to respond urgently to Ramokgopa’s call for input.

“In the longer term, we must ensure that we make use of the structures that have been created by the department of Health for monitoring, evaluation and auditing of service delivery,” she said.

“We will ensure that, through the National Cancer Advisory Committee

Dr Gwen Ramokgopa

established by the Health ministry, we make the inputs on breast health issues.

“We will set up a task team from the stakeholders made up of the full range of SA breast health interest groups that represents our clinical professionals as well as the NGOs to ensure that inputs are provided to this committee.

“A further outcome of this is that the breast healthNGOs have to form a Breast Health Focus Group which will fall under the auspices of the Cancer Alliance to ensure that we work in a coordinated and integrated way.

“We will include the inputs from the South African Breast Health Interest Group (BHIG), who represent the clinical experts.”

Meyer said the stakeholders were more inspired than ever to take the issues further, with the government in tow.

“It was a benchmark opportunity.

The fact that we were able to sit down in one room and talk to the ministry and them being open and inviting us to participate in a meaningful way was a really historic moment for us on Human Rights Day.”

Ride for recovery - bikers reach out along the garden route T

o celebrate the Reach to Recovery International Breast Cancer Support Conference and widen the campaign, a group of cancer survivors will bike from Cape Town to Plettenberg Bay and back under the banner of the awareness event Ride4Recovery.

Frieda Henning Project Manager for Cancer.vive says, “This incredible new venture sees three of the biggest stalwarts in the fight for education

By KATHY MALHERBE and awareness around breast cancer, Reach to Recovery, Cancer.vive and People Living With Cancer join hands to increase the reach. That makes the slogan for the ride, “together we reach,” even more powerful.

Over the past few years, many successful bike rides for awareness have taken place, crossing the country with one goal in mind:

One of the bikers bid farewell to the cheering crowd

teaching people about cancer vigilance. Thousands of people have listened to survivors tell harrowing and “hero”ing stories of survival against all odds.

Supporters and fellow bikers rallied behind them at every chance, but only cancer patients and survivors were allowed to participate in the ride itself. This week’s ride to Plett is open to all bikers, pillion riders and supporters – anyone with the spirit of adventure and the desire to reach out.

The ride kicked off on Friday 22 March from the International Convention Centre in Cape Town and ends up in Plettenberg Bay. The essence of this ride is to increase awareness of the reality of cancer in our communities and to bring the message of early detection and awareness to previously underprivileged communities along this route. Funds raised during the event will be used to provide prostheses to needy patients from these communities and to start cancer buddy support groups for cancer patients and their families in the Garden route area in 2013.

The drive for awareness needs to be a constant reminder, so we salute those waving the flag of vigilance, knowledge and above all, hope.

This newsletter was produced by the team at HIPPO. www.hippocommunications.com