The video series

07.02.20 PNET Brain Cancer Studio Shoot Delivery
Please click on this link to watch the video series (after reading the important information below).

https://www.dropbox.com/sh/s5vuxg3vovtoiap/AABSPGxn8YNgSs5AB8uPT9gOa?dl=0

Important information to read before watching the video series

Background

These videos were made in response to a lack of publicly available psychological support services for families touched by brain cancer. They aim to provide an introduction into how 3 families have been affected by having a family member diagnosed and treated for brain cancer.

The videos were filmed in Melbourne, Australia, with psychotherapist Ron Ingram.

One family had a parent/husband who died; one family had a child who died; the third family has a member who has been living with a spinal tumour for many years.

The videos only represent these families’ experiences. They do not, and are not intended to, represent a solution or give a full representation of a family or individual’s grief.

Recommendations for viewing

As you view these videos, we recommend that you bear in mind the following:

The participants are all at different stages in their journeys of dealing with the grief; your personal experience and the grief you experience will be unique to you.

The videos depict some examples of what people may experience; they are not the only possibilities. Our aim is to provide some information that may be useful and educative.

Particularly if you (or your family member) have recently had a diagnosis, we strongly recommend that you do not watch the videos alone and that you have someone with you. The videos are divided into chapters, so they can be watched in [bite size doses]. The videos are intended to be watched in order so that the experience of these families flows and makes sense.

Model

Ron Ingram developed and uses a 5 stages of grief process model which is derived from the well-known model originally conceived by Elisabeth Kübler-Ross.

According to the Ingram model, the 5 stages of grief are as follows:

1. Debrief – families have often been traumatised by a child’s situation & trying to get help for the child; GP’s, Hospitals, often don’t respond until there is a diagnosis; families benefit from their story being heard & shared.

2. De-grief – families are helped to grieve the loss of their ‘well’ family member & face their fears of further deterioration.

3. De-guilt – whatever theory is proposed, families can still feel guilty – parents fantasise their part in it, however unlikely, this is best put into words & shared.

4. Demystify – the nature of the illness; diagnosis & causes; medication & treatment; phases of the illness; prognosis & negative stereotypes.

5. De-vorce – parents often don’t know what to expect the patient to be able to do; if expect dependant behaviour, then that’s what they get; put parents in charge of making the patient as independent as possible.

Ron Ingram

Ron is a psychotherapist working with individuals, parents, couples & families. He has trained in Family Therapy, Developmental Psychiatry and Psychoanalysis.

[Ron has lectured & supervised at Melbourne University at Mindful in the Developmental Psychiatry Course & the Graduate Diploma in Mental Health Sciences (Child, Adolescent and Family Therapies) in metropolitan & regional Victoria, and Tasmania for over 30 years.]

Disclaimer

The videos are not, and are not intended to be, a source of personal or professional advice. They are merely a tool which it is hoped will assist families facing up to the grief associated with a brain cancer diagnosis.

Although it can sometimes be difficult to find, we strongly recommend you seek early expert help to manage the grief and other symptoms you or other members of your family may experience.

Grief models

The Five Stages of Grief – originally developed by Elisabeth Kübler-Ross about death, and followed up by Elisabeth Kübler-Ross with David Kessler about grief.

Denial

Denial is the first of the five stages of grief. It helps us to survive the loss. In this stage, the world becomes meaningless and overwhelming. Life makes no sense. We are in a state of shock and denial. We go numb. We wonder how we can go on, if we can go on, why we should go on. We try to find a way to simply get through each day. Denial and shock help us to cope and make survival possible. Denial helps us to pace our feelings of grief. There is a grace in denial. It is nature’s way of letting in only as much as we can handle. As you accept the reality of the loss and start to ask yourself questions, you are unknowingly beginning the healing process. You are becoming stronger, and the denial is beginning to fade. But as you proceed, all the feelings you were denying begin to surface.

Anger

Anger is a necessary stage of the healing process. Be willing to feel your anger, even though it may seem endless. The more you truly feel it, the more it will begin to dissipate and the more you will heal. There are many other emotions under the anger and you will get to them in time, but anger is the emotion we are most used to managing. The truth is that anger has no limits. It can extend not only to your friends, the doctors, your family, yourself and your loved one who died, but also to God. You may ask, “Where is God in this?”. Underneath anger is pain, your pain. It is natural to feel deserted and abandoned, but we live in a society that fears anger. Anger is strength and it can be an anchor, giving temporary structure to the nothingness of loss. At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone, maybe a person who didn’t attend the funeral, maybe a person who isn’t around, maybe a person who is different now that your loved one has died. Suddenly you have a structure – your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing. We usually know more about suppressing anger than feeling it. The anger is just another indication of the intensity of your love.

Bargaining

Before a loss, it seems like you will do anything if only your loved one would be spared. “Please God”, you bargain, “I will never be angry at my wife again if you’ll just let her live”. After a loss, bargaining may take the form of a temporary truce. “What if I devote the rest of my life to helping others? Then can I wake up and realize this has all been a bad dream?”. We become lost in a maze of “If only…” or “What if…” statements. We want life returned to what is was; we want our loved one restored. We want to go back in time: find the tumour sooner, recognize the illness more quickly, stop the accident from happening … if only, if only, if only. Guilt is often bargaining’s companion. The “if onlys” cause us to find fault in ourselves and what we “think” we could have done differently. We may even bargain with the pain. We will do anything not to feel the pain of this loss. We remain in the past, trying to negotiate our way out of the hurt. People often think of the stages as lasting weeks or months. They forget that the stages are responses to feelings that can last for minutes or hours as we flip in and out of one and then another. We do not enter and leave each individual stage in a linear fashion. We may feel one, then another and back again to the first one.

Depression

After bargaining, our attention moves squarely into the present. Empty feelings present themselves, and grief enters our lives on a deeper level, deeper than we ever imagined. This depressive stage feels as though it will last forever. It’s important to understand that this depression is not a sign of mental illness. It is the appropriate response to a great loss. We withdraw from life, left in a fog of intense sadness, wondering, perhaps, if there is any point in going on alone? Why go on at all? Depression after a loss is too often seen as unnatural: a state to be fixed, something to snap out of. The first question to ask yourself is whether or not the situation you’re in is actually depressing. The loss of a loved one is a very depressing situation, and depression is a normal and appropriate response. To not experience depression after a loved one dies would be unusual. When a loss fully settles in your soul, the realization that your loved one didn’t get better this time and is not coming back is understandably depressing. If grief is a process of healing, then depression is one of the many necessary steps along the way.

Acceptance

Acceptance is often confused with the notion of being “all right” or “OK” with what has happened. This is not the case. Most people don’t ever feel OK or all right about the loss of a loved one. This stage is about accepting the reality that our loved one is physically gone and recognizing that this new reality is the permanent reality. We will never like this reality or make it OK, but eventually we accept it. We learn to live with it. It is the new norm with which we must learn to live. We must try to live now in a world where our loved one is missing. In resisting this new norm, at first many people want to maintain life as it was before a loved one died. In time, through bits and pieces of acceptance, however, we see that we cannot maintain the past intact. It has been forever changed and we must readjust. We must learn to reorganize roles, re-assign them to others or take them on ourselves. Finding acceptance may be just having more good days than bad ones. As we begin to live again and enjoy our life, we often feel that in doing so, we are betraying our loved one. We can never replace what has been lost, but we can make new connections, new meaningful relationships, new interdependencies. Instead of denying our feelings, we listen to our needs; we move, we change, we grow, we evolve. We may start to reach out to others and become involved in their lives. We invest in our friendships and in our relationship with ourselves. We begin to live again, but we cannot do so until we have given grief its time. The other stage model we have included is the “7 stages of grief” (see: https://www.recover-from-grief.com/7-stages-of-grief.html)

It is important to interpret the stages loosely, and expect much individual variation. There is no neat progression from one stage to the next. In reality, there is much looping back, or stages can hit at the same time, or occur out of order. So why bother with stage models at all? Because they are a good general guide of what to expect. For example, generally, a long period of “depression” (not clinical depression), isolation, and loneliness happen late in the grief process, months after the tragedy strikes. It actually is normal and expected for you to be very depressed and sad eight months later.

Outsiders do not understand this, and feel that it should be time for you to “get over it” and rejoin the land of the living. Just knowing that your desire to be alone with your sad reflections at this time is normal will help you deal with outside pressures. You are acting normally. They just don’t “get it”.

“The 7 Stages of Grief”

Here is the grief model we call the 7 Stages of Grief:

1 SHOCK & DENIAL- You will probably react to learning of the loss with numbed disbelief. You may deny the reality of the loss at some level, in order to avoid the pain. Shock provides emotional protection from being overwhelmed all at once. This may last for weeks.

2. PAIN & GUILT- As the shock wears off, it is replaced with the suffering of unbelievable pain. Although excruciating and almost unbearable, it is important that you experience the pain fully, and not hide it, avoid it or escape from it with alcohol or drugs. You may have guilty feelings or remorse over things you did or didn’t do with your loved one. Life feels chaotic and scary during this phase.

3. ANGER & BARGAINING- Frustration gives way to anger, and you may lash out and lay unwarranted blame for the death on someone else. Please try to control this, as permanent damage to your relationships may result. This is a time for the release of bottled up emotion. You may rail against fate, questioning “Why me?”. You may also try to bargain in vain with the powers that be for a way out of your despair (“I will never drink again if you just bring him back”).

4. “DEPRESSION”, REFLECTION, LONELINESS – Just when your friends may think you should be getting on with your life, a long period of sad reflection will likely overtake you. This is a normal stage of grief, so do not be “talked out of it” by well-meaning outsiders. Encouragement from others is not helpful to you during this stage of grieving.

During this time, you finally realize the true magnitude of your loss, and it depresses you. You may isolate yourself on purpose, reflect on things you did with your lost one, and focus on memories of the past. You may sense feelings of emptiness or despair. 5

5. THE UPWARD TURN- As you start to adjust to life without your dear one, your life becomes a little calmer and more organized. Your physical symptoms lessen, and your “depression” begins to lift slightly.

6. RECONSTRUCTION & WORKING THROUGH- As you become more functional, your mind starts working again, and you will find yourself seeking realistic solutions to problems posed by life without your loved one. You will start to work on practical and financial problems and reconstructing yourself and your life without him or her.

7. ACCEPTANCE & HOPE- During this, the last of the seven stages in this grief model, you learn to accept and deal with the reality of your situation. Acceptance does not necessarily mean instant happiness. Given the pain and turmoil you have experienced, you can never return to the carefree, untroubled YOU that existed before this tragedy. But you will find a way forward. You will start to look forward and actually plan things for the future. Eventually, you will be able to think about your lost loved one without pain; sadness, yes, but the wrenching pain will be gone. You will once again anticipate some good times to come, and yes, even find joy again in the experience of living. You have made it through the 7 stages of grief.