|RHYLEE WINN, "A
Kick to the Head", A Hodder Book,
Sydney, 2000. ISBN 0 7336 1302 0. $21.87 (Aust). Out of
stock from booksellers but available from the author Fax:
07 34252626, postal address R.Winn c/- PO, DAYBORO Q
4521, email firstname.lastname@example.org,
$22 posted anywhere in Australia.
I have not met Queenslander Rhylee (pronounced Rial) Winn but his personality comes through loud and clear in his book "A Kick to the Head", written in 2000 after he had been diagnosed in February 1995 with an oligodendroglioma brain tumour and underwent a craniotomy and radiation therapy. He e-mailed me this year (June 2003) and said that his health was good so far, which makes him an eight-year survivor and an encouragement and example to many.
Rhylee had a fertilizer agency at Dayboro and ran Brahman cattle on a property called 'Trinity', near Murgon. For years he experienced many warning signs, blackouts, a 'crook neck', and dizzy spells, but believed that he could handle it and ignored requests from his GP, Dr David Sawdon, to have a CT scan.
Rhylee approached his illness and treatment in the same way he approached life and running his business, do what your instincts tell you and, on many occasions, his instincts told him to ignore what the doctors advised. He was convinced that his dizzy spells must have been related to a kick to the head from a Hereford bullock when he was seventeen, after which he experienced headaches for about three years. "I had an appointment once at Brisbane's Princess Alexandra Hospital but chickened out at the last minute and bolted without telling anyone", he writes. He also experienced vertigo and flashbacks.
Later he was hit on the same spot by a broken chain from a truck load and lay unconscious for several hours. Several years later he again went unconscious when he hit the same part of his head on a concrete footpath. For Ryhlee that explained the dizzy spells he was now experiencing, and the 'crook neck' he attributed to constant tractor driving and looking backwards over his shoulder and an 'interrupted blood flow to the brain', but a subsequent test ruled that out.
When the nurses tried to give him the standard neurological tests after his operation the dialogue went like this 'What is your name?' 'It's Rhylle. Now piss off and let me got to sleep!' 'Who is the prime minister of Australia?' 'Don't you bloody know anything?' Maybe he was still emerging from the anaesthetic.
Rhylee has a wife Karyn, and three adult children, daughter Kylie and two sons, Ben and Dan. He was proud of being "a sixth generation Aussie".
While I was working in Queensland during 1966-1973 I travelled to all the main centres with the former Premier Vince Gair, and met many people like Rhylee: small rural property owners, drought survivors, hard workers, "cut the waffle, give me the facts", "I've been through the University of Hard Knocks", types.
Full of biases - and Rhylee displays his fair share - generous, loyal to their mates but not about to trust the experts. Maybe they had been let down too many times by the "experts". As Vince Gair used to say sarcastically to any "expert" in earshot - 'they're like the light on the stern of a boat, good for telling you where you've been, but no good for showing the way'.
Rhylee was not a model patient. For example, he was nearly freaked out by his experience of an MRI and that is not usually the case for all patients. Prescribed the anti-seizure medication Dilantin he threw it away without telling anyone.
The book will be particularly useful for loved ones and carers because it conveys valuable insights into how a particular type of patient with Rhylee's personality might respond to diagnosis and treatment: macho male, self-made, obstinate, tough, and sceptical of the experts in a field he is unfamiliar with.
After all, it seems to be the only book of its type available in Australia. Last night I went into the National Library's on-line catalogue and typed in "brain tumours". All that it showed was four academic books and a reference in a recorded interview with the publisher Richard Walsh to the fact that his daughter died in 1992 from a "brain tumour".
Not much has been written from the patient's or care giver's perspectives. There is the excellent "Navigating through a Strange Land" (available through Brain Tumour Publications and Resources), which is printed in the USA, and one or two others, plus several on-line diaries which I have linked to in the Marg's Journey website.
How many "Rhylee's" are out there? At one stage his wife removed all his day clothes from his hospital cupboard because she was afraid he might do "a runner" and the GP made a point of personally visiting Rhylee at lunchtime soon after the diagnosis because he was afraid that he might "top himself".
I guess only a close family member would know the patient well enough to evaluate if either of these fears were justified. I suspect it is this uncertainty about a patient's personality and reaction which influences the attitudes of surgeons and medical staff. In Rhylee's case the neurosurgeon kept repeating "let's just go by the facts", which was something Rhylee could understand and accept.
Eventually Rhylee got a CT scan - on his daughter's 21st birthday. He wasn't too impressed at having to sign an authorisation document which stated that there was a small risk of death involved in the CT procedure.
Unable to wait until they reached the GP Rhylee opened the interpretation letter accompanying his scans and read 'Large mass - left parietal - suggestive of malignant brain tumour'. Rhylee exclaimed to his wife "I can't believe this bullshit. How can they tell that from X-rays? I don't care what they say the damn things show."
After they talk to the GP Rhylee goes to the local pub to have a beer with his mates. The news has spread around town and they can't believe that he has a brain tumour - "But you don't look any different". To accommodate them Rhylee 'screwed up his face and put on a lopsided limp', which apparently broke the ice.
It's worth reading the book if only for this very minor episode because it confirms what I have often suspected about peoples' reactions. Granted that there is not a great deal of understanding in the community about brain tumours (I was quite ignorant until my wife's diagnosis) people hear the word "brain" and immediately try to associate it with something they might be familiar with and what often comes to their mind is the image of a person affected by cerebal palsy.
That night "exhausted, frightened, in shock and half drunk, I went to bed and slept like a log". Even on the day of his hospital admission he wanted to go to the farm 240 kilometres away to see his beloved working dogs but his wife talked him out of it.
At the hospital he broke down and stood beside an entrance pillar for an hour believing that "if I made that last step I might never come out of there alive". In the hospital while waiting for a bed he has a couple of dizzy spells "... the smell of the place was getting to me and so was the depressing sight of so many poor crook buggers".
It seems that Rhylee was having difficulty in accepting that he was one of those "poor crook buggers", even if he didn't look like them.
Eventually he obtains a bed and immediately a nurse visits and jabs a needle in his guts, the first of many pre-operative Heparin shots to thin his blood. He later has a seizure and the nurse pulls up the sides of the bed which makes it look like a cot "and didn't I feel like a big dill". Being measured for pressure stockings (to safeguard against blood clots) was another trial sent to test Rhylee.
There is an interesting episode involving a fellow patient and a female doctor who speaks loudly and demeaningly about the patient and a forthcoming procedure he is to have. Rhylee views it as an exercise in "power play".
At his first meeting with the neurosurgeon Rhylee feels like a small child "frightened and very alone" but he warms to the surgeon, makes a deal with him to be informed about the truth, and is told "we won't guess at anything. We'll go with facts".
Right up until the operation Rhylee laboured under the misapprehension that he was to have a simple needle biopsy, something which his GP had mentioned initially, but the neurosurgeon is clear that it will be an excision and this strikes terror into Rhylee.
On the morning of the operation, between 4.30 and 6.30 a.m. he writes letters to his wife and children "in case I didn't make it later in the day". They are reproduced in the book and are very moving and sincere.
Rhylee recovers well from the operation and has a few episodes of tears but he is soon back with his mates in the ward. The only disturbing thing to him is that he is told he will have to undergo radiation therapy when his brain settles down. During a visit by friends he experiences aphasia (word finding difficulty) and thinks that this is the beginning of the end. His wife and daughter, who witnessed the episode, went home "not knowing if they would have a zombie for a husband and father".
When he is discharged and arrives home he is scared - "no mantle of medical safety here". Speaking to a new friend he adopts the word "snappo" to describe his seizures because that's what they feel like to him. Arriving for his radiation therapy he is shocked to see a large sign "The Wesley Cancer Care Centre" - "it was just too blunt", he writes. It is only then that he learns that his tumour is an oligodendroglioma.
He loses some hair, his skull becomes sensitive to heat, and the tips of his ears are affected by the radiation treatment. Meeting another friend with cancer who was also in the fertilizer business he wonders if there is a correlation with their former work and also asks the radiation oncologist about the early kick to his head but the RO does not think there is a correlation. Rhylee asks all the other doctors he comes in contact with and half believe there might be a connection with the kick. Satisfied he has found a cause, he files it away in his brain. (Did they simply tell him what he wanted to hear?)
A neighbour who has a vet friend tells him that radiation therapy can take fifteen years off your life and this worries Rhylee until he reasons that without treatment he would be gone. Once in the waiting room at radiation therapy a nurse insensitively asks if his treatment is palliative or curative. This shocks and depresses Rhylee when he realises that some of his fellow patients "weren't going to get better as I was - they were there to make it a little less painful to die".
His friends and neighbours are suprised when he does not present as thin, gaunt and pale. Again, there are these underlying expectations that the brain tumour patient has to deal with.
The anti-seizure medication Dilantin makes him nauseous and he only pretends to take it when his wife is watching and omits it all together when it is up to him.
Anxious to do something physical he helps a friend cut sleepers but he pays the penalty and the seizures return, putting back his recovery by six months, so he admits. He slipped into depression and abandoned his anti-depressant medication prematurely.
Not being a religious person Rhylee convinces himself that he has received a good omen with the recovery of a friend who suffered a brain injury.
In his recuperation he believes that a new person has emerged and asks constantly "Am I still me?", which is the title of the final section of the book. He answers his own question by saying that he is a new bloke with a change of direction and a change of some values. Money slid from high on the list to last, family and friends are still important. "The need to own part of the earth's surface has gone" and he has a deeper appreciation of nature.
He is still susceptible to seizures which can be triggered by different events but his scans have been clear. He acknowledges that he may have a shortened life but as a new Rhylee Winn he has found satisfaction in writing and other pursuits. Five years after his surgery he joined the Brisbane Brain Tumour Support Group.
Rhylee's book is honest and open and easy to read. It's greatest value could be in giving the medical profession an insight into the brain tumour patient's perspective of their disease and its treatment. Care givers and relatives of a brain tumour patient might also find it particularly useful and many patients have written to Ryhlee saying they benefited from reading his book. It would appear that his oligodendroglioma is of a low grade and his experiences might not be similar to those patients with a high grade, malignant, primary tumour but on the whole it could give them a sense of hope and optimism.
[Available for purchase direct from the author - see details above.]
Click here to return to the main webpage for Marg's Journey.