Presented by Linda Greeff
GVI Oncology

Final Journey Black and White

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.

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.

• The body, mind and soul relationship in cancer management
• Talking about a personal journey through AML and the holistic management of cancer supported by recent research in this area.

• Content

  • Introduction.
  • My journey through AML (acute myeloid leukaemia).
  • What I’ve learned through my Journey.
  • New fields in medicine & latest research.
  • The holistic approach
  • Body
  • Mind
  • Soul
  • Conclusion

• Introduction

“ The medical revolution is at hand. And perhaps the most active rebels will be those of us looking for a better way to wellness. As we evaluate our desires, examine our beliefs, we will uncover the healing powers stored within our bodies. Many, from all over the globe, will walk besides us on this journey. Even Western practitioners who once thought the Western way was the only way, will join us as we discover a elegant route to wellness, a route that integrates the natural, the spiritual , the personal, with the technological advances of our modern world. Through integrative medicine, we begin our journey together. This is the legacy we will leave for future generations.”- Phalen in Integrative Medicine

• Mind/Body/Soul experience becoming a popular theme- magazines, spa’s
• Want tell you briefly about my own Mind/Body/Soul healing experience
• My Personal journey
  Hearing the diagnosis
• Started end of 2000, firth year medical student back in Pretoria
• Just met the love of my life
• Three days after this picture was taken,  got the sudden , unexpected diagnosis of AML
• My Personal journey
• Hearing the diagnosis
• Realised it can happen to anyone, anytime
• Effect on family, partner and friends- shocking
• Worst was:

-          feeling out of control

-          being dependant on others

-          loosing out on ‘normal’ life

-          loosing my hair ( chemo)

• Hearing the diagnosis
• Was in remission after 2 intense chemo sessions (different than for solid tumours), spending Christmas and New Year in hospital
• Still in denial what was actually  happening to me
• Back to ‘normal’ life the first time
• Back to Uni to finish final year Feb 2001
• Deep inside I knew something was still very wrong
• Fearing relapse constantly
• Dreadful year, but continued as before besides for not smoking any more
• Relapse and Healing
• Worst fear became true, relapsed Oct. 2001, few days after our engagement.
• Relapse and Healing

• Felt life so unfair, scared to die and isolated back in hospital -classmates graduated
• Bad prognosis, but this was where real healing started- end of denial and totally surrended to God which resulted in healing of the soul (what matters most)
• BMT was the only way to go next, but first few more intense chemo sessions

• Just knew was not my time yet, still more learning, healing and living to do
• Psychologist started hypnotherapy
• Hundreds of people praying seriously
• Very good support from family, partner and friends
• Amazing spiritual experience of Healing on 3 Nov. 2001- definitely a miracle
• Realised still had to complete journey of physical treatment- need to do all you can on a physical level as well, be a responsible believer
• Cancer is a complicated disease (not just physical)
• To Cape Town for BMT
• To Cape Town to a specific BMT unit for further management Nov. 2001
• Initially down by myself, knowing 2 people. Fiancé came down in March 2002 as my carer
• Another miracle Feb. 2002-Found perfect unrelated donor in France ( SABMR)

• BMT
• Admitted on my birthday preparing for BMT
• Biggest birthday gift ever- a new immune system!
• Had more chemo and full body radiation
• BMT on 24 April 2002
• “Uneventful”, besides usual uncomfortable side-effects:

-             severe and painful mucositis

-             nasogastric tube

-             constant diarrhoea

-             hallucinations on Morphine

-             Psychological: patients dying around me in ward  and sleepless nights

• Months after BMT
• Most difficult time, everything not over yet
• Frustrations:

-             Back in hospital

-             Regular IV treatments

-             Blood tests

-             Heaps of pills

• Months after BMT
• Post-cancer treatment fatigue
• Survivor’s guilt
• Depression and suicidal thoughts (Thyroid, fatigue)
• Extreme boredom

But

• Patience and endurance
• Months after BMT
• The time body uses all energy to recover
• Then only realised what I’ve been through
• Thought depression and tiredness never going to pass
• But went back to Cape Town Uni and finished last 2 months of final year I missed
• Extremely grateful and proud on graduation 6 Dec. 2002
• Graduation
• Life goes on
• Big challenge to go back to ‘normal’ life
• Intern year in Cape Town  Groote Schuur 2003- not easy
• In 2004 worked as Community Service dr. in Psychiatry -Mitchell Plain
• Wedding:

Big highlight: Married on 10 April 2004

Blouberg Beach

• Life goes on
• Completed my Diploma in Psychiatry later 2004
• Then over to Aus to work for 2 years
• As Registrar in Psychiatry at RPH
• Aus courses in Clinical Hypnosis and Nutrition
• Came back to SA Jan 2007 worked in my own Holistic GP Practice and others
• Started in GVI March 2008

• What I’ve learned through my Journey
• Cancer is not a death sentence
• There is a purpose with everything
• Miracles still do happen
• There’s no quick fixes
• Support system is extremely important
• What I’ve learned

• Important to heal as a full human being -Mind, Body and Soul
• Need a Multidisciplinary/ Holistic approach to deal with the multifactorial causes and effects of the diagnosis and treatment on all levels of the human being
• Alternative/ Complementary therapies can make the journey more bearable, provide explanations and hope

• Complementary/Alternative  Medicine

• Definitions:

Complementary medicine- treatment used with Conventional Medicine.

Alternative medicine- treatment used instead of Conventional Medicine.

Homeopathy- the use of the same thing that is causing the symptom in miniscule amounts as balls/tinctures to stimulate body to heal itself

Naturopathy- the use of natural treatments incl.

Nutritional Medicine, Western herbal medicine, Chinese Medicine( Acupuncture, Chinese herbs), Homeopathy

• Other interesting fields in medicine
  1. Psycho-oncology

The field dealing with relationship between psychological factors and both the development and progression of cancer.

( Holland,2001)

Goals:

-           to reduce stress and enhance wellbeing

-           deals with psychological reaction of patients and family in all stages of the disease

-           Explores psychological, social and behavioural factors that will impact on incidence and survival

• 2. Psychoneuroimmunology
• Field investigating interactions between mind and body
• “This is a major area of research expansion in the next decades”
• “It is hoped that that we will soon be able to harness and amplify the beneficial healing powers of the mind.”
• 3. Integrative Medicine

Field in medicine dealing with integrating mainstream Western practice with Complementary/ Alternative therapies, most often with philosophies of the Eastern medicine, in pursuit of holistic patient care.

• 4.Clinical Hypnosis

• Gaining more favour again under some Western practitioners as a Mind-body Complementary therapy (Ex. research re hiccups in conventional)
• Similar to guided meditation and visual imagery
• Realised power of the mind when Christian psychologist worked with Hypnotherapy while in hospital after relapsed
• Made huge difference!!

• Clinical Hypnosis

Benefits for me by using power of the mind with psychotherapy

-             Recovered quicker after chemo sessions

-             Less side-effects and complications

-             Side-effects more bearable

-             Decreased anxiety

-             Could focus better on long term positive benefits of chemo

-             Heal past issues, more energy to cope that time

-             To open up for love from others and self

-             Realised so much to live for

-             Improved self-esteem and trust in self

• Clinical Hypnosis
• Done a few courses in South Africa and Australia since started as doctor
• Used it in:

-             Pain in children and adults

-             Minor surgical procedures

-             Rheumatic arthritis

-             Cancer

-             Anxiety

-             Self-esteem problems

• Research in Mind-Body Medicine
• People with Depression have under active immune systems and a increased susceptibility to disease.
  ( Herbert & Cohen, 1993)

• Brain (centre for emotions and thoughts), nervous system and immune system communicate to each other through specific chemicals in complex biological pathways. Speaks ‘same language’.

Mind has influence on body and vice versa

• Mind-Body research
• Chronic, excessive psychological stress weakens the immune system.( Kennet et al,1985) by increase in cortisol release
• Psychosocial support groups increases life expectancy and immune systems of cancer patients. (Spiegel, 1998)
• Relaxation techniques (meditation, yoga, visual imagery) and therapy (hypno- and psycho) influence the immune system positively. (Gruber et al,1993)
• Mind-Body research
• The contribution of psychological factors in the cause, progression and treatment of cancer is receiving increasing attention. (Lewis et al,1994)
• Emotional supportive relationships are associated with longer survival in cancer patients. (Maundsell et al, 1993)