Breaking the cancer taboos

Babalwa Ursula Malgas (38) had never done a breast self examination before, but on that day in October 2011 when she touched her breast and found a lump, she knew it wasn’t normal.

Not belonging to a medical scheme, Babalwa went to the Frere Public Hospital where she lives in East London for a check up, and a biopsy confirmed that she had breast cancer.

“I was standing in the passageway of the hospital right next to the doctor when he told the nurse: ‘Book her for a mastectomy – we have to remove the breast’ without even consulting with me first,” said Babalwa. “I felt betrayed, naked and insulted to find out that my breast will be removed like that.”

After that experience she pulled all her resources together to have the mastectomy done at a private facility.

“Growing up in a township, even as an educated woman, I didn’t know you could get cancer in the breast. I only knew of cancer of the womb and the throat and then it generally believed that either that person is promiscuous, or they are bewitched,” she said.

“Cancer is a taboo subject. People don’t just talk about it. In fact, only after my own diagnosis I found out that my aunt, who passed away a couple of years ago, died of lung cancer. We were told she died in an accident.”

These are the reasons most cancer cases in this country are only diagnosed at a very advanced stage – either people don’t realise they might have cancer when they develop a lump or get symptoms, or they keep quiet about it out of shame.

A bold Babalwa has just finished chemo and is still on cancer treatment – so far she seems to be free of the cancer that took her breast.

After her experience she decided to break the silence around cancer in her community and now makes it her mission to spread the news about cancer to everyone, especially the uneducated who live in rural areas and townships.

“There is still a lot of work to be done. Because even if people knew about cancer, accessing treatment is still very difficult for most,” she concluded.

Celebrating life with the Amabelle belles

left to right, Wadeedah Jaffer; Lenora Hammond; Merlin Osborne; Judith Jaars; Maureen Robinson; Justine Quince; Cheryl Walters; Shane Fish and Wendy Scurr in the front.

Cancer survivors can change the world

At a session on the last morning of the conference, panelists from South Africa, Zambia and the United States shared their views on the role of NGO’s, health departments  and civil society  including advocacy groups, service providers, survivors and researchers  in creating awareness campaigns, educating and  creating innovative treatment protocols.  Sharon Kapambwe, who runs a Cervical Cancer Prevention Program in Zambia, believes that NGO’s who start small innovative projects and show they can be successful, will attract government involvement and buy in as well as attracting other organisations and companies to come on board.

She says the initial programme in Zambia started small  – conducting cervical cancer tests on HIV positive women who came to collect their anti-retrovirals.  They found that 80% of those with a low CD4 count had abnormalities of the cervix – 20% of those having full-blown cancer. The small testing programme grew organically.  “The government noticed our success and adopted the project so that to date 100 000 women have been tested and 20 centres opened across the country,” says Kapambwe.

She continued by saying that in Zambia as far as cervical and breast cancer issues go, ‘we make sure we involve government from the beginning.’ The NGOs are the catalyst, the trainers and monitors to make sure there is a high standard of practice. Just because we start the programme and set it up, at no stage can we dictate to government about how the project will be run. They are a key partner and even though we have to hand over a sustainable project to them we can only expect them to what they can. Just because we have identified the need for a clinic to be open every day does not the mean the government can afford to do so. We can recommend but not dictate.”

Sandhya Singh representing the Department of Health South Africa’s Non Communicable Diseases, stresses the importance of the role of civil society in preventing, treating and supporting cancer patients.  “The more civil society consolidates the greater the efficacy in working with the government.  For example the newly formed Cancer Alliance representing all forms of cancer has been interacting at a high level with the department of health but also with other departments involved in service delivery. The Department of Health chose Human Rights Day and the conference to announce the launch of Cancer Alliance, South African’s first umbrella group of 19 cancer advocacy non-governmental organisations and advocates, representing approximately 80% per cent of NGOs, engaged in advocacy and support for South Africa’s cancer patients, in marking Human Rights Day, confirmed its commitment to empowering cancer patients and promoting their rights with the launch of its Cancer Patients’ Rights Charter.
All the panelists agree that women should not be seen as different body parts.  Logically, economically and logistically it is far more realistic to test for cervical cancer, breast cancer and HIV at one centre. The global trend has been to start Women Wellness Centres where women’s general health is looked after.

All the panelists agreed very strongly on the issue of survivors and their role in preparing for the ‘cancer tsunami.’ Leigh Manasco from LIVESTRONG in the USA says that NGOs are very important as the bridge between patients and survivors – they have access to data and are able to empower survivors. These are the survivors that we need to include when convening stakeholders.  The more of a voice they have, the greater the impact they will have on raising awareness. Singh says, “At yesterday’s meeting the deputy minister of health, Dr Gwen Ramokgopa was adamant about the role that survivors should play in The National Health Commission task teams for Non-Communicable Diseases (NCD).”

Manasco says, “We believe at LIVESTRONG we must continually evaluate how things are working on the ground. We need to extract the lessons we learn and adapt the programmes. There is no question of one size fits all.” Kapambwe cites the example in Zambia where ‘we cannot ignore the role of traditional healers. Usually it is the first place people go for help and whether we like it or not, we have to incorporate them.  For instance we have approached traditional healers and asked them ‘if a woman comes to them with problems by all means treat them but please send them to the local clinic afterwards. They appreciate the respect they are given and are happy to refer women to the clinics.’ They all agreed on the importance of public/private partnerships and to involve all role players in the process.

Singh says it is very important in South Africa that government engagement is based on respect- both partners responsible for that.  ‘We want to be told we do have gaps we do want to close gaps. Campaigning for Cancer has repeatedly reported, poor service delivery, poor communication by health service providers, lack of medicines and other unacceptable issues. We have to respond to these complaints. Quality of service and lack of access are very important – it is unacceptable to have a patient dying in agony because there is no morphine available. But to be accountable we need to know what is happening on the ground.”

Kapambwe says in terms of advocacy by NGOs, the success of this was demonstrated recently in the Zambian when Parliament asked for presentations on breast cancer, cancer of the cervix and diabetes.  Not only from the ministry of health but invited NGOs  working with cancer survivors to make presentations to the parliamentary health committee. By hearing from people who had actually suffered they were given a human face. ‘We are very lucky that our First Lady is an obstetrician and she is a great advocate for testing. When she talks about how important it is for women to go for breast or cervical cancer tests, the clinics are flooded the next day.’

Stigma

The issue of the stigma around breast cancer and cervical cancer is an issue globally. Manasco from LIVESTRONG  says the United States are creating a document outlining what stigma looks like in each country.  The stigma index will be available to everyone so that they can take the knowledge and use it to work in their own countries.  ‘If we can de-mystify cervical and breast cancer it will go a long way towards encouraging people to be tested and not hide their condition.’

Kapambwe says stigma in Zambia is a huge problem. “For example there is no word in our language for Cervical Cancer. Women will say, “I am bleeding’ or she ‘has a disease.’  It is not customary to discuss reproductive health issues – not even breasts. It would be totally unheard of for someone to tell someone they have a problem with their breasts or vaginas.”  She says there is a conception that if you contract breast cancer or cervical cancer you have been promiscuous or have HIV  that you are being punished for having done something.  This is particularly true when people have no access to TV and can’t read. They are also afraid to acknowledge they have these diseases – they think it is a death sentence.  We need to bring out survivors to break the stigma. It is the survivors who will convince people that it is not.’

Singh says that in South Africa the stigma of HIV Aids continues and is horrendous and women cancers create a great deal of stress and tension. Women won’t go to a clinic because they are scared of being ostracised and don’t feel comfortable talking to someone at the clinic.  In some communities just talking about your body even if you don’t have a disease is difficult.  Breast cancer and Cervical Cancer still have huge stigma attached to them.

There is no doubt that breast cancer and cervical cancer are serious issues across race, culture and socio- economic levels. The good news is that conferences like the 17^th Breast Cancer Support Conference has been a  fantastic platform for sharing challenges, solutions and creating one voice for the battle against them globally.  The role of survivors is integral in the drive to encourage women to look after their bodies.

Judging by the enthusiasm and knowledge shared by those who have battled and surviced breast cancer,

‘Yes, Cancer survivors can indeed change the world’

Panelists included:

Sharon Kapambwe:   Cervical Cancer Prevention programme CIDRZ Zambia

Sandhya Singh: Non communicable diseases Department of Health South Africa

Ann McMikel, American Cancer Society

Leigh Manasco, Livestrong foundation

 

My sons gave me a reason to fight

Kathy Malherbe, a journalist covering the 17^th International breast Cancer  Support Conference for three days is  also a breast cancer survivor. She wrote many of the stories on this blog and in our newsletter.

 

Kathy is 53 and lives with her son Justin, 20, in Rondebosch, Cape Town. Her other son, Phillip, 23, works on a luxury yacht in France. After living with breast cancer for years, Kathy decided it was time to make a difference. She learnt to ride a motorbike and then hopped onto a 650CC Honda with a group of breast cancer survivors to spread a message of hope across the country.

‘When you are a survivor of any kind, life is not just there anymore. Each new day is precious. Facing your own mortality comes with this gift. The gift of being able to live in full consciousness and being grateful every day.’

Just before Christmas in 2000, I discovered a lump in my breast. When I went for surgery – a lumpectomy – the doctors found out there were in fact four tumours.  I had radical surgery,  reconstruction and glands removed from under my arm. My sons were 8 and 11 at the time, and my biggest fear was leaving them behind. They were too young to be without their mother. I remember thinking, ‘please let me survive until they have both matriculated.’

It was ironic, and in retrospect I should have perhaps bargained a bit better, that when I went for my check-up in 2010, the same year Justin, my youngest son was in matric, the doctors discovered another lump. I had a lumpectomy and radiation therapy. I have another three years of hormone therapy ahead of me.

At the time it felt like a death sentence

I was only 39 when I was diagnosed with breast cancer, which in my mind was fairly young. It felt like a death sentence at the time. I had so many problems with both surgeries and sometimes the physical difficulties were overwhelming.  But I realised that you can’t fight cancer on your own. You need help – medical and from friends – even though it is sometimes hard to accept it. And my sons gave me a reason to fight.

I was also given an opportunity that not many parents have.  Because I was aware of the fact that I might not be with my boys to the end of their school careers, I savoured every precious moment I had with them. I spent many nights catching up on work because I had spent the day at their school events. But it was worth every minute. And now I have a tapestry of wonderful memories to look back on. I still cherish every second I spend with them. They are exceptional young men and they have been through so much. They are very supportive of me.

It was during my radiation therapy in 2010 that I decided to give something back. But during my radiation, when I was too tired to put one foot in front of the other, I thought of those women who have to catch a taxi to the hospital, wait all day for treatment and then take a taxi home. I had a car, an appointment at the radiation department and friends cooking for me. And was exhausted

So in 2011,  I decided to join the Journey of Hope motorbike ride. The 1700km ride by 15 breast cancer survivors (two men and 13 women) aimed to spread the message that early detection can mean a 95% survival. We also raise funds for those less privileged.

Learning to ride

Before my first lesson I was so terrified I was in tears. But a fellow rider lectured me saying that learning to ride was nothing compared to what I had already been through. I fell off the bike 5 minutes into my first lesson in a very undignified manner! Picking gravel out of my hands, I decided no motorbike was going to get the better of me!

After much practice, I rode the 1700kms through the northern part of South Africa in October 2011 last year, spreading the message and raising funds.

The camaraderie between the riders and the support team was incredible.  There were tears and laughter, and we were always met with huge smiles and open arms by the people we met – despite the unbearable heat along the way!

In 2012 I again rode in the Journey of Hope ride – from Johannesburg to Durban and back – this time as spokesperson for the group.  It was an incredible experience and I do believe we touched many people along the way.

Bringing hope to sufferers

Sometimes the group of bikers would leave towns in a flurry of sirens and flashing lights as ambulances and police cars escorted us out of town. As we rode off we were always aware we were the lucky ones, and hoped to bring encouragement to those who may face the challenges we did.

A wish list

My ambitions and goals changed after I was diagnosed too.  I decided to make a wish list of things I would like to do in the five years following my diagnosis, and slowly started to do them.  I focused more on my career as a freelance journalist. I also always wanted to snow ski and made a point of saving up and taking my sons on a skiing holiday. And I learnt to play the piano. Believe me I am no Beethoven but I love my weekly lesson and play with gay abandon whenever I can.  I never lose sight of the fact that I have been very, very lucky.

The campaign pays tribute to that woman who have lost the battle, and encourages women to be vigilant about keeping in touch with their health. The value of early detection cannot be stressed enough. We also hope to banish the stigma and fear surrounding breast cancer.

 

Erma Bombeck, wrote this in her famous poem,  If I had my life to live over’ after she found out her breast cancer had spread:

‘But mostly, given another shot at life, I would seize every minute… look at it and really see it … live it…and never give it back.’

I’ve been given another two shots at life….

 

 

Here’s the final newsletter!

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History in the making

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 co-ordinator 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 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.”

 

Breast cancer athlete

A breast cancer athlete – that’s what Kenyan cancer survivor Katheke Mbithi calls herself.

Mbithi, who also calls herself a “warrior” when she visits women with breast cancer is on a passionate quest to transform people in their unique personal journeys with the disease in a country where breast cancer still carries a stigma.

Speaking during the session entitled Reaching and Strengthening Survivors, Mbithi said in Kenya, breast cancer is, in many areas,  a taboo subject.

When Mbithi, a wife and mother of two children, was diagnosed with breast cancer in 2005, her father suffered a stroke soon afterwards – as he firmly believed she would not pull through.

In a heart-wrenching presentation, she told delegates that family members from a rural area visited after her diagnosis and thought she was dying after her diagnosis.

It didn’t help that Mbithi was five-and-a-half months pregnant. It was breast cancer volunteers who helped her with her child after the birth when she went in for treatment – she took a decision with her family not to start treatment until after the child was born.

“My husband’s aunt told him he must find himself another wife as I was going to die. I didn’t talk to her for six years, but, since then I have realized it is not her fault. She is ignorant of the disease and the Bible says, “forgive them … they know not what they do.” I forgave her and a lot of other people who thought I was going to die. It had a big impact

Mbithi adamantly refutes any statements that a breast cancer diagnosis is a death sentence.

These days, she devotes herself 24/7 to the Kenya Cancer Association, Reach To Recovery, Kenya and the Nairobi Hospital Cancer Support Group.

“There is nothing more rewarding and fulfilling to me than when I introduce myself as a breast cancer survivor,  a warrior,  and people say, but you do not look like you have cancer…

“I always reply, but what does a person diagnosed with breast cancer look like? You should hear the answers I get!”

Apart from the inspiring work she does with cancer sufferers – “my phone is never off and I am available at all times” – one of her key missions is to change the perspective on the illness in Kenya.

“When you tell them you are a survivor and that you were diagnosed eight years ago, they don’t believe you. We must work to change that.”

Speaking in the same session, Joanne Lovelock of Australia, a ten-year survivor, spoke of her work with the Cancer Council in Victoria, the Breast Cancer Network in Australia and the Breast Intentions support group.

Lovelock, who was diagnosed in 2003, spoke of the numerous “breast friends” she has made since her diagnosis – and the rewarding experiences she has had as a volunteer.

“From little things, big things grow,” she said of her own personal and professional growth after breast cancer.

Breast cancer has changed me for the better

There 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 her son, 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 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.”

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