Topics covered were:
How to build relationships
What is cancer
Discussions and different treatment modalities
Cancer staging
Special investigations for cancer patients
Communication
The patient active model of care

A Special word of thanks to Discovery for sponsorship of the travelling cost of the trainer. Without this sponsorship the training would not have been possible.
The oncology ward nursing manger, sister Bernice Lass and all her support of her clinical and management team at the Donald Gordon Oncology Centre is much appreciated.

We look forward to the full utilisation of this group of new Cancer Buddies in future and would like to thank them all for their
contribution.

Linda Greeff
Director PLWC

A big thank you to Dr Adam Nosworthy for his support and contribution to the project.

PLWC Pretoria

Here are some trainee feedback:

Gawie Lotter

The Cancer Buddies (CB’s) of  Pretoria have been in active operation since May/June 2009 under the organization and guidance of dr Wilma Lotter and Nella van den Berg.

Since then they have gathered on a monthly basis sharing, comforting, listening, telling, supporting each other. This group of  PEOPLE LIVING WITH CANCER have over the past months influenced each other in a very positive and encouraging manner.

The CB’s get together on the first Saturday of each month at 14:00 in the conference room of the Little Company of Mary Hospital in Groenkloof, Pretoria. The management of this Life Hospital make their facilities available to this group free of any charge and tea and coffee are always also available.  Over the months the group was also “entertained” by various guest speakers, sharing and motivating! Always with the most wonderful results! Unfortunately a few of the Buddies lost their battle against CANCER over this period.

This CB group is now actively in action for 8 months. However, although going strong and being active, there was a huge need for Cancer Buddy training. The aim of this being to provide basic communication skills preparation of a Buddy visiting newly diagnosed cancer patients with a similar diagnosis to them;  to provide greater self awareness in the use of a trained Buddy as a tool to support others going through a crisis and most importantly to set clear guidelines as to the Do’s and don’ts of a Buddy visit to a newly diagnosed patient. This all incorporated in a BASIC COMMUNICATION SKILLS TRAINING WORKSHOP.

So, at last a CB training was formally organized over the weekend of 6/7 March 2010. Linda Greeff from People Living With Cancer, Cape Town, flew up to Pretoria to head the training program and act as facilitator. A group of 16 Buddies attended the course. Of the most important aspects dealt with were :  emotional aspects in dealing with cancer, self awareness, self complexity, building relationships, key principles to be taken in account and first visit practical patient session. Detail time was spend on the following over the two day period : self awareness, building a relationship, positive language, non-verbal communication, observing, listening, empathizing, self complexity, hardiness, patient active approach and buddy documentation.

The training weekend session was a huge success with a very positive outcome. Linda Greeff did a tremendous job and was complimented with her ability to facilitate.

The following CB’s were trained :

Phumelele Zulu          (Breast Cancer)
Jean Robinson            (Breast Cancer)
Caroline Nel               (Breast Cancer)
Nella van den Berg     (Breast Cancer)
Hannie Belsten            (Psychologist;  Non-Hodgkins Limfoma)
Wilma Lotter               (Medical Doctor; Ovarian Cancer)
Leonie Joubert             (Oncology Sister; Osteo Sarcoma)
Frans Joubert               (Brain Cancer; husband of Leonie)
Marinda Foster             (Myelodisplasia Syndrome)
Raynolda Makhutwe    (Ovarian and Cervical Cancer; Call Centre Johannesburg)
Alet vd Westhuizen      (Pharmacist; work in oncology research, care giver, father died of lung cancer, mother died of pancreas cancer)
Amanda Basson            (Care giver)
Brian White                   (Care giver, friend got Karposi Sarcoma)
Ken-Charles                   (Care giver, friend got Karposi Sarcoma)
Florence Maseloane       (Care giver, friend got Karposi Sarcoma)
Danie Foster                   (Care giver, wife cancer sufferer – Marinda above)

Dr Wilma Lotter; CB Pretoria Branch Co-ordinator

Jean Robinson

What an inspirational weekend !!!

Phumelele Zulu

I only realized when I was sharing with other trainees that I shifted the attention away from cancer into work after I was diagnosed with cancer in 2001. The week-end gave me a chance to reflect on how I felt then and also during and after chemo, surgery and radiotherapy. I was lucky in that I consulted a Psychologist before surgery; she gave me confirmation that I was stronger than cancer. Somehow I walked over it all this time.

The training made me realize that it is a giant step that I have taken, that is, to want to be a buddy. I am ready to take the first step to offering my support and share my experience with any person living with cancer that I will come across. Although I stay in Pretoria, I hope to go back to KwaZulu-Natal and share with more women and men even especially because it is taboo in my culture to talk about cancer.

I want to thank Dr Lotter and her team for arranging the training and also Linda Greef for empowering us.

Raynolda  Makhutle

I  became  one  of the previlaged and  honoured trainees to attend a  Buddy  Training this past weekend of the 7th & 10th March 2010. This course was facilitated with great insight and excellency by Linda Greef, the director and founder of  PLWC.

As a  cancer survivor I expierienced  a very eye-opening, inspirational, motivating and equipping weekend in Pretoria.
I  have learnt so much about the following:

. The  important role/approach  of  a volunteer  in giving support to people living with cancer.

. The  engagement of  Patient  Active  Model with newly  diagnosed  cancer  patients.

. Understanding  the ” Cancer  Buddy ” Program, Vision and Goals

. Being passionate in what  one is doing.

. Allowing  patients to draw an action plan (not  forcing one’s will).

. Allowing people to express their feelings and being  sensitive.  (Being there doesn’t mean you know it all)

This training has changed the way I used  to do, think and act.  Gratitude became my motto: ” knowing that one has to live to the fullest even after diagnosed, not die before”.  Being a cancer survivor  is a privilage.  I have learnt to apreciate life and the chance I was given to add value in the lifes of people who have lost hope.   I have learnt that  you don’t judge people, but understand what they are going through.

By being there for people makes a difference.  Caregivers/families feelings are also very important.  They have emotions and should be given a space to express their feelings.  We don’t have to focus on the survivor only.  A Buddy should  be sensitive and humble at all times.  There were moments where we cried together when sharing what everybody went through and some still going through.  Knowing that people experience pain in different ways, taught me to love unconditionally.

I  thank  The Almighty for providing us with Health Professionals and  Buddies who were in the training.  They gave motivation and words of wisdom to everyone there.

Once more this has been, and still is, a great achievement to be imparted with such knowledge.

THANKS    LINDA – YOU ARE A  LEGEND!

Presented by Linda Greeff
GVI Oncology

Final Journey Black and White

Email: dr.gjl@absamail.co.za
Phone: 012 343 5263

Sharing Thoughts

We had a special sharing Buddy group in January and these are some of the  tools we discussed to assist us in managing our own cancer journeys.

Home – The importance of having a sense of Home  when one faces the cancer journey.  Home is where we come to after a bad day for warmth. support, nurturance and safety – where you can just be you !!   It could also mean Home where we go to when we die… if you want.  Minnie Kriek shared a beautiful poem  by T S Elliot:

“We shall not cease from exploration
And the end of all our exploring
Will be to arrive where we started
And know the place for the first time.”

Acceptance of what happens to us when we have cancer and the trails and tribulations this brings to our experience , acceptance of our emotional roller coaster journey with all the reality of that and allowing for the sad, mad and bad feelings to be explored

Second Chance – Often having cancer is seen as a second change as it somehow makes us realise how precious live is and how much we have to live for,   somehow we did not embrace life  when we were cancer free….somehow having cancer makes us realise  how precious life is.

Forgiveness – The importance of forgiveness was discussed of ourselves and others.

Flexibility – is needed in how we live our lives allowing for more spontaneity and less rigidity, greater gentleness.

Physical Health -Realising the  gift of physical health when you lose it and struggle to get it back, the importance of healthy eating and choices when you are on treatment  and the struggle to keep this up.

Mind, Body, Meditation – really focusing on attending to  mind , body and soul as we journey the cancer journey and that this journey is different for all of us, we all need different things and we need to pursue what we need to heal our own mind body and soul.  Meditation is a tool to be used in this process but  a hard skill to acquire!!!,

Vigilance in the way we approach all we do being ever mindful of all the above issues.

Rest – the importance of rest and quite time when you are on treatment and recovering  as the body needs to rebuild itself.

Abundance is such an important tool as we need to focus on creating abundance in our life  by the way we live.   Abundance of love, joy laughter, family, creating memories and living in an abundant  way will enhance healing.

Play links in to abundance as it speaks to allowing yourself to be more playful and light,  even when things are hard and difficult make time to play and laugh and sing ,

Gratitude for small and big things, for support given and opportunities had.

Singing …..singing your life own song ………finding your song … what you need to be happy and joyful………..,

Effortlessness – try to do things with effortlessness.   Do not sweat the small stuff, accept help  and listen to your body ,

Honesty…….be honest about what you feel and need and look at ways of living more honestly as it frees you from  the burden of pretending to be strong !!

Listening to what your body says , what your docter says , what your heart says and needs.  Listen with your whole being, body, mind and spirit and respond to what you hear.

Self-Love, Unconditional Love – The importance of  loving yourself and  not blaming your body for letting you down.  Learning to love the broken body and what it can teach you!!  Loving others unconditionally too is important and working at important relationships are part of our healing journey with cancer !!

Inspiration…. find  this in your life , what do you need to be inspired , who inspires you and why !!,

Compassion – develop this in your life because if you do you will have more to give.  Also be compassionate with yourself !~!,

Discernment – decide what is important to you and pursue that.  These goals help you focus and are important building blocks in your healing process.

Emotions – allow for the expression of emotions, share them with your loved ones even if they are scary !!! ,

Stillness – make time to be quite and to reflect so that you allow yourself time to be refreshed.   When you are quite you hear your body and soul better,  you find peace easier and you are able to seek and work towards balance more proactively.

Present Moment Awareness is where we should focus as this is all that is sure.  Mindful living assist healing.

These are just some of the wisdom shared.  I am sure the group can add  more !!

Till our next group meeting.
Cancer  Buddy Greetings.

Email: dr.gjl@absamail.co.za
Phone: 012 343 5263
Mobile: 082 573 7342

Venue:
34 Loerie Street, West Acres X6, Nelspruit
Time:
15:00
Contact Mary on 082 495 0029 or 076 030 4227

People Living with Cancer
Suidelike Voorstede

Algemene Kanker Ondersteunings Groep

Is jy, ‘n vriend(in) of ‘n familie lid huidiglik besig om kanker behandeling te ontvang? Het jy enige vrae of bekommernisse? Het jy net nodig om met iemand te gesels wat al in dieselfde posisie as jy was? Of is jy ‘n kanker “survivor” en het ‘n behoefte om met ander “survivors” te skakel en op hoogte te bly van die nuutste nuus en inligting.

Die vergadering datums, en onderwerpe van bespreking, vir 2010 is soos volg:

22 Februarie :
“The Ben Zander video Art of Possibility”

29 Maart :
“Nutrition during and post treatment”

19 April :
“Nutrition talk continued“

31 Mei :
“Alexander Technique – Tessa Viotti”

28 Junie :
“Hope in Cancer”

26 Julie :
“How can I really Support Somebody that has Cancer?”

30 Augustus ;
“Patient Active Approach”

27 September :
“Dealing with Anxiety and Depression”

25 Oktober :
“Sexual Issues”

29 November :
“How to make Treatment Decisions more effectively”

Plek:

Vincent Pallotti Hospitaal in die GVI Onkologie eenheid

Tyd:

18h00 – 19h30

Enige pasiënt en versorger is welkom. Bywoning is gratis.

Enige navrae kan gerig word aan Eldré Strydom by

076 775 6099 of info@plwc.org.za.

www.plwc.org.za

People Living with Cancer
Southern Suburbs

General Cancer Support Group

Have you, a friend or a family member been diagnosed with cancer? Do you have any questions

or concerns? Do you feel the need to talk to others who have been in the same position?

Or are you a survivor and would just like to meet and interact with other survivors?

Meetings will be held on the following dates in 2010:

22 February :
The Ben Zander video Art of Possibility

29 March :
Nutrition During and Post Treatment

19 April :
Mindfulness and the Use of Meditation

31 May :
Alexander Technique – Tessa Viotti

28 June :
Hope in Cancer

26 July :
How can I really Support Somebody that has Cancer

30 August :
Patient Active Approach

27 September :
Dealing with Anxiety and Depression

25 October :
Sexual Issues

29 November :
How to make treatment decisions more effectively

Venue:

Vincent Pallotti Hospital in the GVI Oncology unit

Time:

18h00 – 19h30

Any patients and caregivers are welcome. Attendance is free of charge.

You can contact Eldré Strydom at 076 775 6099 or info@plwc.org.za with any questions.

www.plwc.org.za

Wits University

Donald Gordon Medical Centre

Cancer Support Group

to be held on the following dates:

2010

January 9
February 13
March 13
April 10
May 8
June 12
July 10
August 14
September 11
October 9
November 13
December 11

9h00 for 9h30

at 18 Eton Road, Parktown

(opposite WDGMC main entrance)

Enquiries:

Bernice Lass, WDGMC, (011) 356 6148

Chris Olivier, People Living with Cancer / CANSA
plwc@icon.co.za or 083 640 4949

Any Patients and caregivers are welcome

by Linda Greeff

PLWC Director and Ovarian ca survivor

Buddy Meeting Southern Suburbs Cape Town

October 2009

Defining Hope

n  “Hope is a belief in a positive outcome related to events and circumstances in one’s life. Hope implies a certain amount of perseverance” (Wikipedia)

n  Hope according to Groopman is the elevating feeling when we see in the mind’s eye, a path to a better future.

n  The St Jude Hope Research Translation Team defines hope as “a personal, comforting and sustaining belief that life has meaning even in difficult times.”

n  “Even a man who finds himself in great distress, in which neither activity nor creativity can bring value to life, nor experience give meaning to it – even such a man can still give his life a meaning by the way he faces his fate, his distress, by taking his unavoidable suffering upon himself.  Life holds a meaning for each and every individual, and even more, it retains this meaning to his last breath.  Life never ceases to have a meaning.”   – Victor Frankl

n  Hope:  “Is a way of thinking, feeling , and acting.  It is a cognitive-affective resource that is a psychological asset.  It enhances quality of life, and it is a prerequisite for taking action.” – Susan C Hedlund & Elizabeth J Clark

n  Hope: “is a multi dimensional dynamic life force characterised by a confident yet uncertain expectation of achieving a future goal which, to the hoping person is realistically possible and personally significant.” – Palliative care

n  Hope: define as expectation and desire.  A feeling of trust. – Oxford dictionary .

n  It is an emotional state and produces motivation to act. When the hope is gone, so is the motivation to act. Hope is referred to in contrast with despair. Hope is essential to life. Without hope we may be overwhelmed by uncertainty and fear.

n  Meaning:  Viktor Frankl described in “Man’s Search for Meaning” – “A man is pushed by drives, but pulled by meaning.”

n  Meaning:  “What is meant by it?” – Oxford dictionary

n  Making sense / finding meaning in what has happened in your life is crucial ingoing forward with hope.

n  Hope is rooted in reality. It acknowledges obstacles and possible pitfalls along the way. It gives us the courage to confront our circumstances and the capacity to surmount it.

n  Hope allows us to assess the problems, challenges and obstacles and through information, guidance and support to choose a possible realistic path for the future.

n  Hope assist us in drawing up an action plan to deal with the cancer crisis

n  Hope doesn’t take away emotions like sadness, fear or anger but allows us to express it more healthily and to look for constructive ways of dealing with the difficulties causing it.

n  Hopefulness is inside each one of us and as everything else can be influenced in a good or bad way.

So What then ?

Arthur Frank in his book “The Wounded Story Teller Body, Illness and Ethics,” published by The University of Chicago press in 1995 provides a excellent context to understand the importance of storytelling (witnessing) as giving voice to the bodies experience that could assist in building hopefulness.

By telling stories people living with cancer are assisted to construct new maps and meaning in their relationship to the world after their diagnoses with cancer and so doing start building hope.

Serious illness threatens the destination map of people diagnosed with cancer, and erodes hope for example:

• They need to learn to think differently to be able to make sense of the experience and to keep on living with the disease in a different hopeful manner.
• They need to live until they die and not die while they are living
• Being a witness to someone else’s story ( Cancer Buddies)allows for the development of sacred space for both the both the listener and the teller, by turning the suffering into a testimony the possibilities of unique outcomes are opened up and this adds richness to the process of sharing for people living with cancer, caregivers and professionals.
• The essence of this process  is not about the truth of the story but the fact that stories are told, shared by people who knows suffering and who care enough to sit alongside someone that is struggling with suffering..

Frank says “ One of our most difficult duties as human being is to listen to the voice of those  who are suffering”

Things that can steal hope

• Cynicism – self, others, media.
• Suffering.
• Loneliness.
• Overwhelming fear
• Constant conflict
• Fear
• Loss of a dream
• Anxiety /tension/stress
• Lack of security
• Depression
• Loss of joy
• Loss of meaning
• Lack of support & caring
• Low self worth
• Uncertainty
• Lack of emotional connectedness

Ways to encourage and grow hope

• Stay in touch with Hope Resources – people / things that positively impact on your sense of hope
• Manage anxiety – relaxation, exercise, a healthy outlet for the anxiety.
• Create and acknowledge sparkling moments.
• Believe in God.
• Develop your spirituality
• Believe in yourself.
• Be an active participant in life – never a victim.
• Keep a journal (written or mental) about the good things in your life.
• Empower yourself with knowledge.
• Add humour to every day.
• Seek and utilize support.
• Trust in the good intentions of others.
• Build healthy relationships.
• Help others (BIG sparkling moments!!).
• Make time for fun activities.
• Connect with your dreams.
• Set achievable goals and celebrate their fulfilment and immediately  add new goals
• Sharing relationships
• Make the ordinary extra ordinary
• Contributing to something  meaningful will develop hope
• Having choices builds hope
• Feeling safe and secure builds hope
• Often time a crisis has the potential to transform your life if you choose to  view it as a challenge to move from mediocrity to a higher-level  of awareness and meaning

Building hope

• It is important to set boundaries on things that steal hope.

• Maintain a sense of wonder in your mind and body .

• In difficult times think about “I wonder what strategy my body and mind will come up with to deal with this  more effective and creatively ?”.

• Implement hope building activities.

• Surround yourself with people that facilitate hope building relationships  .

Ripple effect of a life filled with hope

• Hope helps in creating feel good feelings
• Assists with problem solving
• Builds positive and lasting relationships
• Self esteem is boosted
• More joy is experienced
• Coping ability becomes easier to maintain
• Resilience  becomes more and can be sustained
• Emotional state will be more stable
• Creativity is increased
• Facilitates  openness
• Awareness increases

Aspects to ponder

1. Think of a situation in your life where hope sustained you.
2. Think of a situation in your life when hope was very low and something happened to restore hope again.
3. What happened that restored hope?
4. Think of things in your life that is stealing your hope.
5. What steps are you willing to take to start getting back to the positive aspects of

Conclusion

• Sharing stories repair the damage the illness has done, it redraws the map of our experience  and allows for the identification of new, exciting and meaningful destinations and builds hope .

• The process of taking “stock” of what remains after the “chaos story” of the crisis of the illness provides a way out of the damage wrecked position after the cancer crisis–this actions reaffirms the self and assist the recovery of the self and builds hope.

• Support groups and the cancer buddy program provides a context for sharing and creating meaning, it allows the acknowledgement of suffering and the sharing the meaning making practices and assists in building hope .

• Being a witness to one to the other allows the mutual reflection and reassurance that is needed for resurrecting hope and meaning.

• This process allows reconnection to one’s self and moves away from a thin (diminished) description of self to a thick and rich description that adds meaning to the lives of the storyteller and the witness and rekindles HOPE.

I had to remind myself that I lived through it already. I had known pain, and survived it, it only remained for me to give it voice, to share, for use, of  the pain not to be wasted.” Audre Lorde

Nietze said “ By naming his pain he gave the pain a use that provided an opening for him to others.”

Susan Sontag uses the metaphor of having  dual “citizenship ”in a remission society .

The membership to the cancer remission society does not have permanent passport, they have temporary visas that they renew now and again as they move through the illness experience.

Hope is the stamp of renewal for this visa as we journey with cancer through our lives without it travelling on this cancer journey become impossible.