CAN I TAKE MY PANDA DADDY?

"Can I take my Panda Daddy?", Greg Crooks (crooksgj@ceinternet.com.au), Boolarong Press, (search by name of author) $24.95 AUD (listed price), 248 pps. www.boolarongpress.com.au or (07) 38488200.

I am very privileged to receive a large number of communications by telephone and e-mail from people who have a connection with brain tumours. They are people who have been involved in some way, or have just commenced, a compulsory journey for which they had no choice.

Some of those who contact me have read the story of my late wife's journey with her glioblastoma tumour which is chronicled on the website titled "Marg's Journey" which I commenced while she was still alive and have continued to this day, with over 100,000 people having accessed it.

They write, often to tell me about their own story and to express relief at discovering there is someone else who has experienced what they have. Others phone me on the BTA Freecall number (1800 282 912) to request information publications to help them cope with a journey they are travelling with a loved one, and if I believe they may benefit from communicating with someone in a similar situation I will try and forge links for them.

The other day I received an e-mail from a man in Brazil. His 35 year old wife has a glioblastoma brain tumour and they have two children 4 and 8. In broken English he wrote: "We are fighting versus this terrible tumor. My hope is broke because my loved wife is walking to death. I don't know what should be done...I need my wife and my children need her...".

His expression "my loved wife is walking to death" is so sharp and heart rending in its direct simplicity that all I could do was repeat it to myself "... my loved wife is walking to death".

The following day I received in the mail a copy of Greg Crooks' self-published book "Can I take my Panda Daddy?". It is the story of his four year old son's illness and death from a malignant primary brain tumour. It is the first Australian book to describe a brain tumour journey since Rhylle Winn's "A Kick to the Head", published in 2000, which chronicles Rhylle's journey with an oligodendroglioma brain tumour.

Greg had sent a copy of his manuscript to me last August asking for comments. By that stage it had been through many hands and many rejections. Greg had completed it in 2001 a year after his son Sean had died. The title refers to Sean's favourite Panda. Take it where? Take his Panda with him to hospital. Sean is also affectionately known as Bubba.

Greg's manuscript had a deep and scarifying impact on many of us who read it but what could we say to him about the intensity of his writing, his brutal and unashamed frankness which made us cringe because of our own hesitancy and reserve?

I guess most readers of that draft, like me, suggested kindly to Greg that there would be no real commercial market for his book and perhaps he should tone down some of that brutal frankness about himself, his wife, his relatives, the treating doctors and staff, in fact anyone with whom he had contact during his son's illness, such as his passing references to a whole cast of people, including "bored ambulance officers" and an impatient funeral director. His nine year old daughter Sophie is both "endearing and exasperating" and his schoolteacher wife Jane "has put on weight since we met but is still attractive". I imagine she responds: "Yes, and Greg wears size 16 clod hoppers ... on his head!"

Well, the trouble is that Greg, a palliative care nurse by profession, obviously possesses huge quantities of the very thing that many of those who accompany someone on the brain tumour journey are left with - a legacy of unfailing trust in your own instincts. He decided to thumb his nose at the rejection slips and self-publish his book, not as a money-making exercise but as a tribute to his son and for others to gain an understanding of "what it was like for us and others like us".

Greg's home is at Woolgooglga, a small NSW town on the coastal route north of Coffs Harbour, which you are likely to come across when travelling to Brisbane from Sydney.

The story commences with Sean exhibiting undefined symptoms and escalates when a Doctor states hesitatingly: "There could be neurological involvement". At Coffs Harbour Hospital another Doctor says: "he could have a brain tumour". After a CT scan it becomes "a lesion in his brain stem. We're not sure what it is but it is probably a brain tumour". The air ambulance flies Sean, Greg and Jane to the New Childrens Hospital at Westmead in Sydney. After an MRI they learn that Sean has a brain stem glioma. "Jane's fingers crush mine. Her nails cut my skin". A biopsy reveals it to be a pontine astrocytoma. Radiation therapy is recommended, with the possibility of extending Sean's life by twelve months. Greg and Jane stay at the Ronald Macdonald house. On the first night their double bed collapses and through their tiredness they laugh.

Greg describes intimately Sean's new environment: "Homesick for England, nurse Carole clumps around looking miserable. Even so, she has endeared herself to us with her winks and smiles".

Those family and carers who spend time in hospitals can develop a closeness to staff and it is sometimes reciprocated. It is strange then when after everything is over you meet them again. A friend whose young daughter died from a glioblastoma tells of returning later to the hospital where she had been treated and the nurses asked him "What are you doing here?", almost as if the past association had been for a specific purpose and he had infringed the unbroken rules but he only wanted to ask if he could be of help in linking with other families undergoing the same experience as he and his wife had.

Greg communicates with other parents and learns that "all parents do as we have done when a child is gravely ill. They drop everything and instantly prioritise."

Sean is moved to another ward and is stable enough to be returned to Coffs Harbour. During the next few weeks they experience the ups and the downs of the roller coaster ride that many brain tumour patients and their carers are forced to take and then on 13 January, early in the morning, with his favourite CD "Thomas the Tank Engine and Friends" playing in the background, Sean dies.

The remainder of the book deals with their life in the next year after Sean's death.

As you accompany someone on the brain tumour journey you are sometimes forced to make hard decisions and often there is no signpost, absolutely no guidance as to which route to follow or when to raise your hand and say "Excuse me, does this need checking ...". You learn to trust your instincts - chemo or not ...radiation therapy or not ... phone for an ambulance ... challenge what the Doctor just said ... is that a DVT ... have the serum levels been checked ... Greg Crooks' powerful instinct that he should publish his book, despite the hesitancy which was conveyed by myself and others, has resulted in what will be a priceless gift for many.

Beth Risely, whose mother in the USA died from a brain tumour, allowed me to reproduce on the Marg's Journey website one of her writings about the "journey" and its varying routes. It is this journey which fuels the growth of your gut instincts.

Beth writes: "There are NO easy roads on this journey. Some are narrow, dirt roads, full of rocks, fallen trees, and obstacles---and are very difficult. Others are like highways with smooth travelling, with many varying grades of roads in-between. Occasionally, God will put detours that "guide" us to a road we would not necessarily have chosen, but sometimes He lets us make some decisions about the road travelled. Some of these roads have beautiful scenery such as the Grand Canyon, Niagra Falls, forests, wildlife, flowers, sunrises and sunsets, which allow a very pleasant trip, albeit a trip no one really wants to take. These roads lend themselves to "quality of life"...a chance to enjoy the last days/weeks/months of one's life as much as possible, and a chance to reflect on the things that are REALLY important in the big scheme of things.. Some roads are winding, cut through a cliff, with boulders, with nothing but solid rock on each side, high into the sky...no scenery to enjoy...only the constant eye on the road and the obstacles right in front of you...a constant struggle, and sometimes very physically draining, just to continue down the road, but you have no choice...you have to keep going..."

Beth was writing about her experience with her 77 year old mother. How much more difficult it must be when you are travelling the road with your wife, a nine year old daughter, and a four year old son who has barely started on life's journey but has commenced "walking to his death".

I know that when my wife was first diagnosed I desperately sought some indication of what may be up ahead. I tried to contact a woman whose husband had recently died from a brain tumour but it was difficult, she had converted her phone to a private line and I could only approach her through third parties, it was as if the shutters had been drawn on the outside world.

I then came across the then on-line book "Beyond the Road's End", the 153 page story of Mary Fish's five-month journey with her husband Tom (unfortunately no longer available as a downloadable file). I thought I would read it aloud to my wife and we could share this experience but the more I read the more I realised that the journey got tougher the further they travelled and I put it to one side, no longer to be read aloud, but curiosity remained and so I read it privately and was bruised by the revelations of what might happen. I switched instead to reading aloud the entries in the web diary of Micki Esselstyn contributed by her husband and their children as she prepared for what was up ahead, revisiting old friends and familiar places, nurturing her family, conversing and ruminating.

What is up ahead? Can we prepare for it? Will awareness make the journey any easier? Will knowledge help us control what is often an uncontrollable situation in which we are powerless to intervene?

Writing is often the only weapon we have left in our armoury. On-line diaries - and I have linked to forty-eight brain tumour journeys on my website - enable us to express our feelings and to share, to break through the isolation, to reach out to others, to validate ourselves, as is often the case with diaries of any kind. As a contemporaneous record they can be part of the experience of anticipatory grief, a concept that I had never heard of until after my wife's death.

A diary of what you have experienced, published after the immediate trauma as Greg has done, may help you to travel through the grief process, to break through those cul de sacs which can produce what is known in some quarters as "spiritual death".

Why am I writing so much about the context of Greg's book and not the contents of the book itself? The reason is this - it is an attempt to explain to people why they might simultaneously experience both excitement and fear at the availability of this book and the opportunity it provides to read about the feelings and experiences of a father who grieves deeply for his dead son ... and who has been there. It is not a voyeuristic entrapment but can be part of a healthy need to understand one's own grief or impending (anticipatory) grief.

It is also part of our fascination with and fear of death. Janine Sayers of Melbourne, whose husband Brian also died from a glioblastoma, has stated in a collection published recently by Palliative Care Australia (A Journey Lived): "I wanted to tell our story because I don't think enough is done to demystify illness and death in our society" but later she added: "I have found writing this quite difficult at times and I'm sure it has taken me so long to do because of the enormity of the subject. There is so much to feel and think - writing it down has been somewhat confronting and draining, but maybe someday I'll find it healing too".

That the very process of writing the book had a cathartic effect for Greg is obvious from his final words:

"My tears are dripping to the page and my hands are shaking as I write these last lines. My throat is so tight I can scarcely take breath. In a minute or two, everything will well-up; for my words have kept many of my emotions at bay, but no more. Now I can cry for my hurt and my loss, and for my Son.

This was the little boy of whom Greg writes in the early pages: "From the start our little boy has loved cuddles, hugs and holding hands as much as games and independence. Early on he learned to avoid a tongue lashing by batting his long eyelashes and extending his arms."

The most difficult part of this journey is to maintain hope while being realistic so that extreme optimism does not blind you to what is happening and what may eventuate in the future, be it a week, a month, or years.

Last March I was invited to address the Glioma 2005 conference and I chose to mention the subject of "hope". What prompted me was the reading of Cameron Fulljames' book "On a Wing and a Prayer". I had met Cameron in Wimbledon in November last year, he died a month later and was buried on Christmas Eve.

In his short book Cameron describes an important meeting with a Professor from the Department of Clinical Neuroscience, six weeks after his first seizures. "My parents were desperate to hear something positive and they weren't disappointed," Cameron wrote.

The Professor told Cameron and his parents that surgery could be performed and later there will be radiation therapy.

Cameron wrote: "I wanted a prognosis and asked the question, How long did I have to live? The professor shrugged it off quickly and replied, 'Ask me again when you're seventy, Cameron.' 'You mean he will live to an old age?' my mother asked excitedly. 'Of course madam. There is not a disease, illness or cancer on this planet that somebody hasn't made a full recovery from, and that includes full-blown AIDS'. The mood in the room had changed completely. The positivity was electric."

I am aware from other sections of his book that Cameron did not lose sight of his own mortality during his journey but the great difficulty for all of us when faced with this threat to ourselves or our loved one is in developing a sense of realistic hope, not false hope. However, the preservation of some form of hope seems to me to be essential for both carer and patient.

So, what do we do when a book like the one written by Greg Crooks arrives on the scene?

It is honest, scarifying and truthful. It describes a possible sequence of events and experiences that might be visited upon any other family whose child has been similarly diagnosed with a malignant primary brain tumour.

Will they want to know about this possibility? Will it help them to cope better with what might be up ahead? Will it lead them into the pits of depression, too paralysed to help their loved one or to make the most of the precious time they have?

It will differ from person to person and family to family. Some may not want to read the book now but may wish to be aware of its existence so they can read it at some time in the future.

I hope therefore that this review will enable those whose loved one has experienced the journey with a malignant primary brain tumour, or might only now be commencing it, to know precisely where Greg's book is coming from because they will be the only ones who can judge if the book might be useful to them.

Well done Greg, I believe your book will be a significant contribution to the brain tumour community. Thanks for not taking any notice of my hesitancy.

Denis Strangman, Canberra, 26 June 2005.

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