Advocacy pays off!

In 2014 we set out with the vision of an equitable and sustainable breast cancer policy for all. This policy was approved in April and was officially launched in East London on Friday. This is indeed an achievement! This means that our advocacy pays off.

Even though the policy was approved – the policy is by far not complete as there are still gaps in the policy. The decision was to focus on Phase 1 to ensure that the treatment aspects are in place before focusing on the community awareness and clinical breast examination as well as the supportive care and palliative care aspects. Other gaps are the provisioning of lymphoedema and prosthetic services. We need to make sure that these aspects get the attention that they require in the future.

The policy will be implemented first in five treatment centres: Groote Schuur in Western Cape, Helen Joseph/Charlotte Maxeke in Gauteng, Frere and Livingstone in Eastern Cape and Universitas in Bloemfontein. All of these were selected as they are already in line with the breast policy.

The Breast Cancer policy is at  http://www.health.gov.za/index.php/shortcodes/2015-03-29-10-42-47/2015-04-30-08-18-10/2015-04-30-08-24-27?download=2300:breast-cancer-policy-2017.

You may also be aware of the Tobeka Daki Trastuzumab Access Campaign. Trastuzumab is included in the policy and subsequently added to the Essential Medicines List. This in itself is also a win as there was quite a resistance from the EML Committee to add traztuzumab due to cost. This has opened the case for trastuzumab to be included as a PMB for private sector clients. There are already some patients that are approaching their respective funders.

Access to trastuzumab in the public sector in particular depends on the successful completion of negotiations for an acceptable price, as explained in the BDLive story  (here as “fair use”).

The reality of this is that at this stage there is only one company – Roche – that has a registered drug. Mylan and Amgen are both busy with clinical trials. Mylan has already applied to register their product, however their product is still under review by the FDA and our our MCC still need to get their systems in place for the approval of biosimilars. If the Department of Health want to procure this drug then they must follow the tender route and that would mean that only Roche would effectively be able to tender and these tenders last for two years. The reality is further that even though it is part if the policy, the provinces are responsible for the implementation of the policy and therefor provide the budget for the drug. Some of the treatment centres have already indicated that they would not have the budget for trastuzumab irrespective of price. It would therefor seem as of our advocacy effort will have to take on these access issues as well at a later stage.

For your information the updated cervical cancer policy 2017 is at http://www.health.gov.za/index.php/shortcodes/2015-03-29-10-42-47/2015-04-30-08-18-10/2015-04-30-08-24-27?download=2299:cervical-cancer-policy-2017. The main changes in this policy is

• Taking cognisance of  new technologies namely Liquid Based Cytology
• Test and treat on site at the health facilities
• Guidelines for a full continuum of care

It is worthwhile that organisations also study the content of this policy as the global movement is to focus on women’s health.

The Palliative Care Policy is not yet available

The grieving process

For many of us, the ‘festive season’ is anything but festive as it reminds us of loved ones lost, or of easier, healthier times. Clinical psychologist Marc Lipshitz has written three blog posts that will help you through the grieving process. This is the second.

Grieving is an active process that the griever needs to engage with. It does not passively happen to you but requires hard work and effort. Grief involves choices in coping because we can also choose not to grieve.

Think of a past or current loss that you have not fully grieved. What was or is the reason for this? See if the list below resonates:

• Fear of having to deal with prior losses (as current losses trigger previous losses)

 

• Fear of the unknown and change (especially if this is your first significant loss)

 

• Having other commitments or being too busy(as a result lacking the time)

 

• Being overly medicated (psychiatric medication can numb/dull feelings if the dosage is too high)

 

• Fear of going crazy, losing control or becoming depressed (as a result fear of being trapped in a depression)

 

• Experiencing too many losses at once (this is referred to as bereavement overload)

 

• Lacking the right support (support availability is not the same as support satisfaction- I can have lots of people around me but not one person that I can turn to)

 

• Already being disconnected from your feelings at the time of the loss (in other words I arrive disconnected)

 

• Having difficulty tolerating strong emotions (thus soothing feelings with substances or food and never feeling the feelings)

 

• Believing it was not culturally acceptable to mourn the loss (especially if there was stigma around the death, for example, HIV/Aids or suicide)

Grieving is a non-linear process that occurs cyclically with no specific end point. It involves alternating periods of intensification and subsiding of symptoms. Symptoms may return for years after the loss. The grieving process is highly personal and individualistic involving progress and setbacks- four steps forwards and three steps backwards.

One benchmark of grief that has been processed, and worked through is when the person is able to think of the deceased without pain. There is always a sense of sadness but it is a different kind of sadness- it lacks the wrenching quality it previously had. The griever is able to stay connected to the deceased by redefining the relationship whilst reinvesting his or her emotions into life and in living…

Grieving mindfully

For many of us, the ‘festive season’ is anything but festive as it reminds us of loved ones lost, or of easier, healthier times. Clinical psychologist Marc Lipshitz has written three blog posts that will help you through the grieving process. This is the first.

Grief is a personal journey never the same for any two people, and as unique as your life and your relationships.

Grief may be the experience of continuing to love someone after they die, of longing for a loved one’s presence, and yet knowing that is no longer available. However, grief is not limited to loss through death. Every time you lose a relationship or are faced with uncertainty, you grieve the loss of a predictable and safe world. You experience grief when you move to a new town, lose a job, or go through a divorce. You experience grief when you are diagnosed with a life-changing illness, or when you are separated from a loved one by circumstance. You experience grief when you experience any change in your relationship with yourself or to the world.

Paradoxically, it is often when you try to resist the intense emotions of grief that they linger, and even hurt more deeply when they inevitably surface. Grieving is the process of using your emotional vulnerability not to suffer greater distress, or to intensify your pain but to redirect this pain toward your growth as a human being.

Engaging in this process begins when you come in full contact with yourself and learn to ride the waves of grief. Your thoughts, your feelings, your identity during a life-threatening illness or after loss of a loved one all become vehicles for your own evolution.

Grieving can be understood as making the decision to allow yourself to mourn, and to fully experience the lessons of grief with the goal of living life better. The terrible emotional pain of grief tends to have a life and process of its own. Allowing the process to unfold does not remove all distress but it can soften the sharp edge of pain. To allow the process means to allow yourself to feel and experience each day on its own terms; we cannot assume that we know what tomorrow will bring.

As you are experiencing this process, you will feel that very natural pull to escape or numb yourself from the pain. However, by being aware of grief rather than ignoring or denying it, and by working to understand what drives this pain, you can release yourself into the person you are and the person you want to be. In other words, you can move closer to the people in your life who matter the most, and begin to change habits or beliefs that have been keeping you from living fully.

Just as love depends on the courage to share yourself with another person, grieving depends on the courage to accept your own feelings.

We have a tendency to associate grief and distress with something being wrong. Loss and grief is a part of life. It will happen no matter what we do. If we view grief as a problem, we will think of one of the most natural parts of life, and love, as a pathology or “disorder.” But grief has always been part of the order of things, and it always will be.

When does the fear end?

Does the fear of recurrence ever truly end for a breast cancer survivor and how do we negate its power over us?

Read one woman’s experience in this great blog post

 

Basic banana body builder

If your appetite is suppressed, if you need to build up muscle, if you need to put weight on, or if you are worried about insufficient protein.

4ozs (100g) plain tofu (silken tofu makes a smoother drink)

1 pink (500ml, generous 2 cups) soya milk

2 bananas

2 tablespoons organic maple syrup

1 tablespoon slippery elm powder

2 teaspoons vanilla essence

Whizz together in a goblet blender or food processor until smooth and creamy

If you have difficult drinking from a glass, use a teaspoon and eat it from a small bowl like dessert, or add more soya milk to thin it and use a pretty straw.

 

Try any of these additions or flavour variations

2 tablespoons ground almonds

2 tablespoons cooked brown rice/millet/oats

Any fresh fruit – try mangoes for a real treat

Soaked or cooked dried fruits

1 teaspoon honey or concentrated apple juice

1 tablespoon organic, sugar-free preserves

THANKS TO DR ROSY DANIEL, WHO HAS GENEROUSLY SHARED THE CANCER LIFELINE RECIPES WITH US. THIS RECIPE IS FOR THE TOUGH TIMES, FOR USE WHEN YOU ARE VERY ILL, DURING TREATMENT, WHILE THE APPETITE IS POOR AND THE WEIGHT LOW.

 

What is normal?

Let’s normalise a few things right now:

• There is no “right way” to make sense of what a cancer diagnosis means in anyone’s life
• We can’t expect everyone to react in a similar way, or say the same things as anyone else – each person is unique and of course their response to their cancer treatment will be individual as well;
• It’s very common for people to feel confused, disbelieving or angry when newly diagnosed, but this is not true for everyone;
• Sometimes our bodies even respond to the stress and shock with physical responses – headaches, nausea, diarrhea, sighing, poor sleep patterns etc; and
• Often people look forward to the end of treatment, but sometimes folks feel fearful, uncertain, or more emotional than they did during the treatment.

Blog by Clare Manicom, Oncology Social Worker

The importance of psycho-social care

First up, let’s be clear that our precious family members and our special friends cannot be our therapists.  The honest ones among them will tell you that they really don’t want to be our counsellors either – they just want to be their normal selves – mom, friend, cousin etc.

Then, while we’re being honest – most of us try to protect the people we love from the ugly, ungrateful, hurtful, or dark thoughts that we have around the topic of cancer, its treatment or an uncertain future.  Which makes it hard to truly share with any one person exactly what we’re thinking or feeling.

• We edit what we share
• We filter what we hear
• We are selective about what we remember

So suddenly it’s very clear that actually, it’s pretty tough chatting through our deep emotions with people who are important to us.  We might not have the words to say what we’re feeling, we might not know what to think.  We usually don’t even know where to begin with our emotional “stuff” that we’re told we have to “deal with”.

And that, very simply, is why it is so helpful to meet with a neutral, objective, trained and skilled person when you’re feeling scrambled, low, overwhelmed or plain pissed off.  It is a huge relief to offload on someone whose job it is not to judge you, but to listen to you.  Their job is to calmly provide a safe space where you can say what’s on your heart, cry or rant without hurting anyone’s feelings.

There will be times when that professional needs to challenge your opinions or perceptions, or may need to provide you with clear information that will help set you on a better path.  There are times that your listener may probe a little deeper, or may ask you questions that make you think and reflect more carefully – all this is part of your healing journey.

Seeing someone for emotional support might mean having a few sessions to examine different issues or concerns, or practice new skills in between sessions.  You will not always come away from a session smiling and jumping for joy – sometimes we need to have a “heavy session” that may include tears or rage, as a catharsis.  What you should feel every time is that you have been heard and acknowledged as an individual.  Often you will feel a sense of relief or lightness that you’ve been able to speak your mind – you’ve been brave and honest enough to express yourself and that is an important beginning point…

A social worker with medical or oncology experience will be able to provide emotional support with an understanding of the psychological impact of cancer and its treatment, as well as having insight into some of the practical challenges that people face.  Most State oncology departments employ social workers, and some private practices offer this service as well – ask your oncologist and ask again if you’re not given names to contact!

Some people are keen to join a support group when facing their illness and treatment.  As these groups are run in different ways by different organisations, ask your local clinic about what may be available in your area.  Remember that groups run for the purpose of sharing information are not designed to provide in-depth emotional support, so make enquiries about the purpose of the group, and about who runs it to help you decide whether it’s a comfortable place for you to be or not.

Social media may also be a source of general support but it’s advisable not to risk your in-depth personal emotions in a public forum, or to take advice from people who may not have the professional skills or training to provide psychological support.

Blog by Clare Manicom, Oncology Social Worker

#cancer85years – CANSA research

Through its Type A programme, offering funding to established researchers at South African universities and research institutions, CANSA is currently funding a number of projects addressing breast cancer.

These projects span a wide range in terms of types of research and focus areas. Several projects are looking at breast cancer prevention in basic science studies. Dr Donita Africander of University of Stellenbosch is examining the chemo-preventative properties of bio-identical hormones; Prof Anna-Mart Engelbrecht of University of Stellenbosch is examining whether melatonin can prevent the onset of breast cancer in a mouse model; Prof Ann Louw of University of Stellenbosch is looking at the chemopreventive action of a Cyclopia extract in rat models of breast cancer; while Dr Annadie Krygsman of University of Stellenbosch is examining whether simple dietary modification by restriction of carbohydrate and/or omega-6 fatty acids can prevent breast cancer development in the urban South African context.

A number of other projects are looking at genetic aspects of breast cancer which could impact early diagnosis. Dr Adrienne Edkins of Rhodes University is conducting an analysis of stem-cell associated genes in breast cancer as biomarkers and predictors of cancer malignancy. Prof Lizette Jansen van Rensburg of University of Pretoria is looking at the role of DNA homologous recombination genes in breast/ovarian cancer susceptibility; Dr Ans Baeyens of WITS is examining genetic screening of triple negative and young breast cancer patients in South Africa; while Prof Fourie Joubertof University of Pretoria is conducting an investigation into genetic variation in South African breast cancer patients using genome sequencing.

We are also funding projects in the areas of clinical and public health research. Dr  Herbert Cubasch of WITS and Prof Jennifer Moodley of UCT are both conducting projects that will contribute to our understanding of delays in seeking care and accessing treatment in women with breast cancer in South Africa, and may have significant outcomes for healthcare delivery.

Compiled by
Dr Melissa Wallace, Head of Research
Lorraine Govender, National Advocacy Co – ordinator

#cancer85years – celebrating CANSA

The Cancer Association of South Africa (CANSA) offers a unique integrated service to the public and to all people affected by cancer. As a leading role-player in cancer research (more than R12 million spent annually), the scientific findings and knowledge gained from our research are used to address reduction of cancer, realign our health programmes as well as strengthen our watchdog role to the greater benefit of the public.

Our health programmes comprise health and education campaigns whereby we inform and educate our public regarding how to reduce their risk for cancer, CANSA Care Centres that offer a wide range of care and support services to those patients and family affected by cancer, offer among other things stoma and other clinical support, medical equipment hire as well as a toll-free line to offer information and support. We also supply patient care and support in the form of 11 CANSA Care Homes in the main metropolitan areas to accommodate out-of-town cancer patients when they receive their cancer treatment plus one hospitium based in Polokwane, as well as CANSA-TLC lodging for parents and guardians of children undergoing cancer treatment.

As mentioned, CANSA provides home-from-home accommodation to patients undergoing cancer treatment at oncology clinics far from their homes.

Patients at our CANSA Care Homes stay for an average of six weeks and receive meals and transport to and from treatment centres.

We are there to help and support not only the person who has been diagnosed with cancer but also the friends, loved ones and care givers of those affected by cancer.

To arrange to stay at a Care Home please contact the CANSA Care Home nearest to you and book your stay. For more info, visit www.cansa.org.za or join on social media for more information. CANSA The Cancer Association of South Africa on Facebook, @CANSA on Twitter and @CancerAssociationOfSouthAfrica on Instagram
Cancer survivor, Magda stayed at Mkhuhla Care Home in Durban, Monday to Friday for the six weeks while she was undergoing radiotherapy. She had a room overlooking the garden and made friends with two other ladies who were also staying over and receiving treatment. Every day they were taken to the treatment centre in a minibus.

She shared, “It’s wonderful here….and the meals are just right when you’re not feeling so well. I don’t feel self-conscious. We’re all in the same boat.”

Henk Hills, a recent guest, shared his experience via Twitter, “As a cancer survivor, I would like to thank CANSA and especially the staff at the Tipuana Care Home (Pretoria) for all their support, I really owe you guys my deepest thanx”.

Offering a place to stay is just one of many ways CANSA helps cancer patients cope with this awful disease. In 2015, CANSA with the help of donors and volunteers, brought comfort and care, served meals and provided transport to almost 3 847 individual patients who came to them for help. Find out more on http://www.cansa.org.za/cansas-care-support/cansa-care-homes/

Online Support Groups & Programmes for Survivors

CANSA also has various online support platforms offering support, receiving and providing encouragement from fellow members and sharing stories:

• Facebook Group: Champions of Hope – CANSA Survivors for cancer Survivors https://www.facebook.com/groups/ChampionsofHope/
• Facebook Group: CANSA Caring for the Carers –  for caregivers helping cancer Survivors (patients) https://www.facebook.com/groups/CANSACaregivers/

• Facebook Group: CANSA – TLC specifically for children and families affected by cancer. https://www.facebook.com/groups/CANSATLC/

• iSurvivor Online Support Programme – a 20 week email guide to assist cancer Survivors along their journey and help them cope better – http://www.isurvivor.co.za/

• KickButt Online Support Programme – a series of weekly e-mails to help quit smoking http://www.ekickbutt.org.za/
• CANSA’s CancerCare Coping Kit Audioprogramme and booklet – providing information, practical tools and tips to promote physical, emotional and mental well-being before and during treatment. In short, it helps the newly diagnosed cancer patient and their loved ones to cope with cancer. http://www.cansa.org.za/cancercare-coping-kit/

 

Compiled by
Dr Melissa Wallace, Head of Research
Lorraine Govender, National Advocacy Co – ordinator

 

A voice for the voiceless

 

My name is Martie Westraad. I am 53 years old and live in Suiderberg, Pretoria.  I was worried and concerned about my breast as I could see something terrible was wrong with my one breast. I first went to CANSA in Rietfontein. They referred me to Pink Drive, who immediately referred me to George Makhuri Hospital in Ga-rankuwa.  I was diagnosed with stage 3 advanced breast cancer in March of 2016 after all the required test were done and started with chemotherapy in June 2016. My next appointment was scheduled for 12th July 2016, however on the 8th July I received a phone call from the breast clinic to inform me that my appointment had been postponed as there was no chemo stock available for my treatment. They said I should phone again in August to determine whether they have received stock of the specific treatment. This was very stressful for me as I realised that I cannot miss one chemo treatment and if I do I have to start all over again. My colleagues at work offered to help me financially to pay for the treatment if we could buy it  privately, and if it could still be administed. This was a dead end as well, and to crown it all the staff at the hospital were very rude to me. I decided to phone the Pink Drive as I knew that this is not supposed to happen. I was asked to send an email with all the details, which I did and the next moment the emails started pouring into my inbox from ALL the various organisations that started fighting on my behalf. I sat back and read …. I did not even know that they all exist. I did not even know that this is possible.  That was Friday 8 July. On Monday 11th July I received a personal phone call from the acting CEO of the George Makhuri Hospital, Dr Freddy Kgongwana, to inform me that I must come to the hospital for the scheduled chemo treatment on the 12th July as they have received their stock. I went – and yes I was able to get my treatment on time. THANK YOU to The PINK DRIVE for initiating this CALL for HELP and to ALL the members of the Advocates for Breast Cancer who got on board and voiced their concern about this. You really are the “Voice of the Voiceless”. Thank you to the Department of Health for dealing with this matter so speedily – is certainly good to know that we can depend on you in our time of need!