The importance of psycho-social care

bcpicFirst 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

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Keeping the balance

Over the next couple of weeks, we will be posting a series of recipies that will help you as you go through treatment. The Cancer Lifeline recipies are divided into three phases:

  • Tough Times, for use when you are very ill, during treatment, while the appetite is poor and the weight low.
  • Clean Machine, for detoxification of the body, post cancer treatment, or to kickstart a holistic health creation programme.
  • Eat Right, to set the right style of eating for the rest of your life to generate optimum health.

The recipies have been created by celebrity chef and nutrition consultant, Jane Sen, for the nourishment and healing of people with cancer. The recipies are part of the Cancer Lifeline Kit by Dr Rosy Daniel, which she has generously shared with us.

balance

It has been a good journey!

Merlin Osborne – a survivor for eight years – says that running keeps her sane – including running away from negativity!

walk

You can’t do this journey on your own

“Talking about my cancer helped me to be in a better state of mind and to move on with my healing,” says Beryl Arries who is a 10 year cancer survivor

walk

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

amazing-sunset

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

 

My New Wardrobe

shopping-spree

Any body change requires some wardrobe adjustments. But while shopping for maternity wear can be exciting, shopping for cancer wear is not fun for anyone.

Losing one’s hair and losing one’s breasts – these are the two major body adjustments most people associate with a breast cancer diagnosis. But you are not ‘most people’ and the intrinsically important thing to remember while contemplating one’s changing body and the related body image adjustments that will require, is that every individual needs to make the decisions most comfortable (and comforting) to her. The second most important thing is that, along with everything else on this cancer journey, circumstances and requirements will change along the way.

Immediately post-surgery there are some basic truths.

You will not be able to lift your arms over your head for a while, so front-fastening shirts with buttons or zips will be a must.

If you’re having a tissue flap reconstruction (procedures using tissue from your tummy, back, thighs, or buttocks to rebuild the breast), you will need clothing which is easy on the additional wound sites for the period of recovery too.

If you’ve had lymph glands removed your doctors will talk to you about the risks of lymphoedema (the accumulation of lymph fluid on the side of your body on which you had surgery which can lead to swelling and pain), and the use of compression sleeves and other garments. While extremely functional, these needn’t always be unattractive. American company LympheDivas (link below) specialises in ‘Medically Correct Fashion for Lymphedema’, and they ship to South Africa too.

During chemotherapy most (but not all) patients will lose their hair. It’s a good idea to have some thoughts before this happens on how you’re most likely to deal with that.

If you’ve chosen to invest in a wig the common advice is to: purchase one before chemo starts (while you still have the energy), choose the right colour to suit your skin tone (style can be changed by a practised hairdresser), purchase it in person (there are lots of online sources but you really need to try a wig on) and don’t forget the accessories (care products, a stand, wig caps for wearing underneath it).

Many women chose to wear hats and headscarves instead, but some patients say it’s nice to have a wig for special or specific occasions (I know someone who only ever wears hers to school functions, to make her children more comfortable). And don’t forget a head without hair can get chilly – invest in some soft cotton sleeping caps.

And the big one: if you’ve chosen not to have reconstruction at this time – then you might be shopping for prosthesis. Visit BreastFree to read up on the many prosthetic options, as well as advice on not using prosthetics at all. Locally the Like B4 Mastectomy Boutique provides a dedicated fitting service for underwear and swimwear and with trained consultants to find the best fit, for you.

Recommended Links:

LympheDiva’s (patterned compression garments) http://www.lymphedivas.com

Compassion Hat (local head scarf manufacturers) http://www.compassionhat.com

A good list of Western Cape based wig providers here: http://www.cancercare.co.za/support_services.htm

BreastFree http://breastfree.org/index.php

Like B4 http://www.likeb4.com/

Recommended Read: http://breastfree.blogspot.com/2013/05/post-mastectomyfashion.html (packed full of links to post-surgery clothing providers, all international but many sell online or have local suppliers)

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