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.

 

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

Targeted biological therapies

Approximately 20% of breast cancers are known as HER2 positive. This means that a gene mutation has caused the cells to have an over expression of HER2 receptors and this protein signals the cancer cells to grow and divide.

The HER2 receptor can be tested for by:

1. Immunohistochemistry (IHC)- which shows how much of the protein is on the cell surface
2. In-situ hybridisation (ISH)- which tests the number of copies of the gene inside the cell..

HER2 positive breast cancers tend to be more aggressive than HER2 negative cancers.

Trastuzamab (Herceptin) is a biological therapy that has been designed to specifically target the HER2 receptor in HER@ positive breast cancer. It reduces the risk of recurrence and death in women with HER2 positive breast cancer and prolongs survival in women with HER2 positive metastatic breast cancer.

Lapatinib (Tykerb) is another “HER receptor blocker” that is sometimes used in combination with Herceptin

Side effects:

Although Herceptin has been shown to have greatest benefit when used in combination with chemotherapy, it is not in itself a chemotherapy treatment. Chemotherapy treatments affect all rapidly dividing cells whether they are cancer cells or healthy cells.

Herceptin, however, targets only those abnormal cells with increased display of the HER2 receptor and it spares the healthy cells.

For this reason the side effect profile is substantially less.

Its main possible side effect is on the heart and the use of Herceptin in some patients may require baseline and periodic cardiac function tests. This side effect is usually reversible. In some cases hypersensitivity or allergic reactions can occur and for this reason it should be given in an appropriately equipped facility by staff who are trained to manage a possible reaction. Other less common and mild side effects may include fever, throat irritation and runny nose.

It is an intravenous therapy administered via a peripheral drip into a vein ideally every 3 weeks for one year.

However, it is unfortunately extremely expensive, not yet available in State hospitals and not covered by many Medical Aid schemes.

For those who can afford it, or those whose medical aids will cover it, Herceptin has significantly improved the prognosis and survival of patients with HER2 positive breast cancers to the extent that the outcomes are even better than some patients with HER2 negative breast cancers!

This blog was kindly supplied by Ronelle de Villiers at http://www.capebreastcare.org

 

Hormones and the endocrine system

The role of Hormonal / Endocrine therapies in breast cancer

Approximately two thirds of breast cancers are oestrogen positive which means they have oestrogen receptors on the surface of the cells and therefore depend on the hormone oestrogen for growth.

This has meant that a range of treatments could be developed with the aim of decreasing the cancer growth or stopping the cancer from coming back by preventing oestrogen action on the cells.

These treatments include: Tamoxifen, Aromatase inhibitors, and Zoladex injections.

But what are they, and how do they work?

Tamoxifen

How it works

This is a synthetic hormone that binds to the oestrogen receptors on the breast cells in place of the woman’s own oestrogen. Unlike natural oestrogen, it does not stimulate breast cell growth and therefore has the effect of “blocking” the receptors.

It can be used in both pre-menopausal and post-menopausal women.

Trials have confirmed that tamoxifen significantly reduces the incidence of local recurrence, metastases (spread of breast cancer to distant organs) and breast cancer in the opposite breast.

It is taken as a single tablet daily.

The benefits have shown to be optimal if taken for a period of 5-10 years.

Side effects

Tamoxifen is in the group of Selective oEstrogen Receptor Modulators (SERMS) which means that it has different effects on different tissues in the body. While it blocks the action of oestrogen in breast tissue, it also has partial estrogen activity in other tissues.

This is the basis for its possible side effects such as hot flushes, vaginal dryness/bleeding and endometrial thickening or polyps.

Other side effects have been associated with its use such as thromboembolism, nausea/diarrhoea, weight gain,headaches or dizziness, and low mood.

It is important to realise that not all patients experience these side effects and some may experience them to a very mild and completely tolerable extent.

Aromatase inhibitors (AIs)

How they work

Aromatase inhibitors are another way of reducing oestrogen effect in post menopausal women. In this group of women, oestrogen is no longer produced by the ovaries, but smaller amounts of oestrogen are still circulating. This oestrogen is derived from androgens which are converted into oestrogen by the aromatase enzyme in peripheral tissues such as fat. The AIs block this enzyme and, in so doing, reduce oestrogen production.

There are 3 main AIs: Letrozole (Femara), Anastrozole (Arimidex), and exemestane (Aromasin).

They are prescribed as a single tablet every day for or at least 5 years.

Sometimes they can be used in sequence with tamoxifen where the patient will switch to an AI after 2-3 years of tamoxifen, or as an extended adjuvant therapy where an AI may be started after 5 years of tamoxifen.

Side effects:

Due to the different mechanism of action, the side effect profile of AIs is slightly different to that of Tamoxifen.

The gynaecological side effects are less of a problem with the use of AIs compared with tamoxifen. However, the AIs may cause joint pain, stiffness and bone loss.

Women who are scheduled to start an AI should have a baseline and then periodic Bone Mineral Density assessments (an outpatient X-ray or DEXA scan). Calcium,Vit D supplementation and, in some cases, bisphosphonates may need to be considered.

Ovarian ablation/ suppression

Surgical removal of the ovaries or ablation of the ovaries with radiotherapy has been shown to arrest breast cancer growth due to the depletion of oestrogen.

Ovarian suppression can be achieved medically by using gonadotrophin-releasing hormone (GnRH) analogs. This has been shown to have equivalent effects as surgical or radiation induced menopause with the added benefit of being reversible after the completion of therapy.

Examples of these treatments are goserelin (Zoladex) and leuprorelin (Lucrin).

They are administered as an injection under the skin either monthly or 3 monthly.

These drugs can be used in combination with tamoxifen and aromatase inhibitors in both pre-  and peri-menopausal women.

Resistance

Although tamoxifen and the AI’s have been proven to be extremely effective treatments, resistance to treatment has been described. Further research is being done in order to understand mechanisms of resistance and to combat resistance pathways.

Endocrine treatments such as fulvestrant (Faslodex) are being used in cases of advanced or metastatic disease or recurrence of breast cancer during endocrine therapy. It is an oestrogen receptor down- regulator and is given as a monthly injection.

Selection

The selection of which endocrine therapy or combination of therapies is individualised and depends on whether the patient is pre- or post-menopausal, whether she has contraindications to any of the treatments, treatment interactions with medication she may be taking for other conditions and the extent of the side effects she may develop on the medication. Of course, patient preference is an important consideration. Financial implications may influence treatment decisions too.

Dr Ronelle de Villiers

MBChB, DCH, BSc(med)

 

 

 

 

 

 

 

 

 

 

 

Rice porridge for the tough times

Creamy rice porridge

Delicious, nutritious and comforting. Traditional oat porridge is good too but try this one for extra food value. It is well worth the investment in a small ‘slow cooker ‘as it will be perfect at breakfast time. It keeps for 2 or 3 days in the fridge. Re-heat with a little extra soya milk or enjoy it cold with maple syrup, a chopped banana and a sprinkle of sesame seeds.

2ozs (50g, generous ½ cup) brown rice

2 pints (1 litre) soya milk

Handful of dried fruits (optional)

Cook overnight in an electric slow cooker. If you do not have an electric slow cooker then just bring to the boil in a nice heavy casserole, lower heat to barely simmering, cover and cook for 2 ½ hours. You may need to add a little more soya milk. You can also pop it into a low oven for about 3 hours.

Serve with a little maple or date syrup or compote of fruit.

You can add any dried fruit you like – it is especially scrumptious with apricots or dates.

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.

Making an impact

The Breast Course for Nurses: who we are and what we have done over the last 12 months     

We have run several courses over the last 12 months:

Cape Town, South Africa – 15 nurses trained
Lilongwe, Malawi – 26 nurses trained
Windhoek, Namibia – 30 nurses trained
Ongwediva, Namibia – 30 nurses trained
Harare, Zimbabwe – 257 health care providers trained
Johannesburg, South Africa – 42 nurses trained

An account of each course can be found on the blog: http://www.jennyedge.co.za and Facebook page: www.facebook.com/breastcourse4nurses

The course is constantly evolving and I want to highlight some of the new changes we have made this year.

The major challenge we have addressed is allowing the course to run independently.

I have learnt a lot about teaching through the whole process.  The course was set up along the principles of the flipped class technique.

Unlike teaching at school, the participants on the courses are very varied and most are experts in their own areas.  We were constantly faced with the challenge of having large numbers of health care workers with vastly differing levels of knowledge about breast cancer and differing needs from the course.  In Zimbabwe, we were asked to extend the training to include doctors.  We met the challenge by dividing the 2 day course into 3 day long modules:
Module 1 was capped at 80 students and aimed at primary health care workers, breast cancer advocates and registered nurses.
Module 2 was capped at 50 participants and was aimed at registered nurses from the clinics, oncology sisters and doctors.
Module 3 was capped at 30 participants and was aimed at oncology sisters and doctors.  It allowed us to teach biopsy techniques.

We were also asked to have a “train the trainers” day. In many ways, the request ran against our aim to equip nurses to be self sufficient in their learning.  (The principle behind PEP is that health care workers should educate themselves with the material provided.)  Nevertheless, we blended the 2 approaches and Prof Woods and I ran a day in which we looked at different teaching modalities and tried to apply them to the course.  We defined “teaching” as the “sharing of understanding”
The result was that Module 1 of the Breast Course for Nurses was entirely taught by the nurses who attended the train the trainer’s day and studied the book (Breast Care).  I was immensely proud!

In Johannesburg, we took a different approach to deal with the challenge.  The course was run at Charlotte Maxeke Hospital by Dr Sarah Nietz and her team.  I wasn’t there at all.  I understand that 45 nurses completed the course.  The faculty were entirely local.

Many thanks to everyone who has been involved with the Breast Course for Nurses.  If you wish to become involved, run a course or know more, please contact us.

Dr Jenny Edge, Founder and director of Breast Course for Nurses (PBO No.: 930050375)

Facebook: http://www.facebook.com/breastcourse4nurses

Blog: www.jennyedge.co.za

Email: lieskewegelin@gmail.com

 

 

Throwback Thursday

As we continue exploring treatment options, we decided to take some time to remind you of some posts that you may have missed.

Did you see this one? It is a video that explains what chemo is.

This one tells you how to prepare for treatment.

 

And this one gives you the key questions you should ask when you are getting treatment.

 

Let us know how you get on! We want to hear your stories.

Water Your Own Garden: Practical Tips

Following on from last week’s post about how and why to take charge of your own recovery, we’ve collected together a series of practical tips for you to use in your own recovery journey:

Ensure that you have the right relationship with your treatment team. 

REMEMBER: you have the right to be treated as an equal partner in your health care management.

 

To make sure you become part of your treatment team, it is important to let them know:

 

• how you are viewing your situation — and the way you are choosing to deal with it
• how much information you want to be given
• how hard you want to fight your cancer and to what lengths you are prepared to go medically
• if you prefer not to have medical treatment or to stop treatment you are having
• how you are reacting emotionally to your situation and how well you are coping (or not.) 

 

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ASK = Attitude + Skills + Knowledge

 

IT IS ABSOLUTELY CRUCIAL THAT YOU:

 

• take COMPLETE ownership and charge of your situation, never allowing yourself to be rail-roaded into any treatment decision!
• ask for understanding and flexibility and help if at any time you feel too vulnerable to have treatment
• ask for the support you need
• try to explain to your team your values which underpin your approach and beliefs
• ask your team to be tolerant of the choices you are making with regards to your health care.

YOUR AIM IS:

 

• To get ALL the appropriate information about your situation
• be given time to digest and react to this
• gived informed consent to treatment
• prepare yourself for treatment – and then embark upon your treatment fully confident that YOU have picked the very best course of action for YOU!

NB: if you are unhappy and uncomfortable with your consultant and their opinion,

it is your right to ASK for a second opinion!

 

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TAKEAWAYS:

Here are some seeds to plant in the garden of your heart to grow hope and a healthier, more resilient you: inside and out!

 

(Please note that one or two of the articles are quite scholarly – but we thought you would still find them helpful!)

Healing Gardens

The Healing Garden

Home Gardening: An Effective Cancer Therapy  by The Journal of the Cancer Institute

Growing Hope: Horticultural Therapy & Restorative Gardens by Cure Today 

 

And for those of you who fear their thumbs could never be green, then the delightfully darling Laetitia Maklouf will be just the right cup of tea for you with her book, The Virgin Gardener, which comes wonderfully recommended by one of our bloggers who herself experienced the therapeutically grounding and growing benefits of getting her hands down ‘n dirty!

 

 

 

Uniquity: No Two Women, Cancer or Journey is the Same

What tends to happen is, as noted in our Journey to Joy post, each woman will move through her cycle of emotions  in a way that is completely unique to her – based on her particular life circumstances, the degree of support she has, her personality/emotional style, the type of cancer she has, the type of treatment she needs.

Sometimes we get stuck in one emotion for interminable months – even years. Sometimes we pass through the different emotions quickly and with a degree of relieved ease. Sometimes, we shift into reverse, backing into a stage again if we find we’re not ready for the new emotions, feeling and responses we find ourselves experiencing.

And all of this is normal. It is ok. There is no right way, or wrong way. What must be emphasised is: we must be gentle with ourselves as we try and observe ourselves, almost standing away at an objective distance, as we move within this set of stages, which again – could helpfully be viewed as a journey. So too we must be gentle with those around us who adore and cherish us – who are faced with their own journey and how they’re going to move through their own ones.

What we’re seeing in South Africa is that the vast majority of people being treated for breast cancer do not have access to psycho-social support, nevermind knowing they have a constitutional right to receive support as South African citizens. An effective, equitable breast health policy will ensure that these rights are actively recognised.

We leave you with this:

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”

— Elisabeth Kubler-Ross

 

Write Your Heart Out

“The difference between a victim and a survivor is the meaning made from the trauma.” – Louise DeSalvo Writing as a Way of Healing: How Telling Our Stories Transforms Our Lives.

 

Writing as a Way of Healing

 

Whilst writing is an excellent self-healing tool you can use on your own, it is also vital to seek expert psychological support from a trained professional such as a social worker, psychologist or psychiatrist. Many therapists recommend storytelling and journalling as a self-therapeutic tool – but writing about a trauma without knowing how to write about it is asking for trouble, with the risk of re-traumatising yourself all over again. Louise de Salvo gives these guidelines your writing-as-a-way-of-healing should follow in order for it to be effective:

• Your writing must contain concrete, authentic, explicit details of events, set within a logical narrative/story.
• Then, you need to link your feelings back to the details/events.
• It is important to balance negative and positive words in describing your feelings.
• Remember to reveal the insights you achieved through your painful experience(s).
• Whether you’re writing a daily, private journal, a public blog or an actual book you want to publish, you need to tell a complete, richly detailed,  coherent story.

And while De Salvo notes the incredible healing success people have experienced by writing in this prescribed way, she reinforces the validity of this approach by including medical and scientific proof about what happens when we write like this. Part of the research included measuring the brain activity of test subjects while they wrote about their painful experiences in three different ways:

1. Writing only about the concrete facts of their story. eg. I walked to the shops late that afternoon to buy bread and milk. I was tired and my head hurt. I didn’t have enough money to pay. I had lost my job because I was too sick to go to work.
2. Writing only about the emotions of their story. eg. I felt humiliated, helpless and hopeless. I felt terrified I would never be able to afford all the treatment I needed.
3. Linking the emotions to the events/facts. eg. When I walked to the shops that afternoon, my heart was heavy with sadness and fear because my boss asked me to hand in my resignation. He said he was losing money what with me being off from work so much. This left me feeling useless and hopelessly discouraged. The nausea, constant physical weakness and the constant headaches made me afraid… afraid the treatment wasn’t working and I was closer to dying. Actually, I’m not just afraid – I’m terrified. And now I don’t even have enough money to pay for something as simple as bread and milk! I feel angry that life has thrown this unfair curveball at me! Saying that I am grateful and humbled that my sister has – with her kind and humble heart heart – offered to step in to help me financially every step of the way. This gives me hope, and my heart feels lighter.

“Creativity is a basic human response to trauma and a natural emergency defense system.” Louise de Salvo

Has anyone ever given you the advice to journal your way through your BC journey? How did it feel to pour your heart out on paper: exhilarating? Scary? Liberating? Please tell us – either in the Comments box below, or join us on Twitter or Facebook. Our follow-up post will look at the medical and scientific evidence to support why writing is just what the doctor ordered! (PS. This gives you the perfect excuse to splurge (a little) at Typo!)