Follow the links and you will find a small collection of writing from my journal - writing that helped to combat fear as my husband and I faced the devastating reality of bowel cancer during 2000
Thanks to the surgeon, oncologist and medical staff at Epworth Hospital Darryl has recovered and is enjoying a period of good health.
In 2001 we spent six months travelling in Europe, Scandanavia and the
United Kingdom and some of the photographs taken during that restorative
journey are sprinkled within personal pages
on this site.
Combating Cancer with Words
July 1 2000
Back from Sydney I still have over a week of holidays before the next semester commences. It was wonderful to leave everything behind and take a complete break. Now I have to be careful not to slip back into the usual daily grind and rut. No wonder my poor body has been complaining of recent months. I can now see that I have been pushing too hard, trying to do too much. So today I have made a mid year resolution to establish a new habit - to get some balance in my life and help make my wheels move around more smoothly.
I once read that if you sustain a practice for twenty one days then it becomes a habit. Consequently I often suggest to people that they make it a practice to write each day for twenty one days. Now it is time for me to fit some other things into my day and to make sure that I actually have some leisure. So for the next twenty one days I will try to explore some options. I found 52 Relaxing Rituals at Oxygen and so I thought that this month I would try exploring some of them. For example a favorite ritual of mine, when I am trying to bring some order into my life is to clear some cupboards and reduce some of the clutter that I seem to have gathered around me. After staying with my orderly sister-in-law for a week I feel the need to take action. My pantry looks like the dogs breakfast compared to her neatly organized, spotlessly clean kitchen cupboard. I know there are lots of clothes that are gathering dust in my clothes basket and I really must organize all my books so I know where things are. It is time to get rid of the things that have been gathering dust. Tomorrow I will begin by ruthlessly piling things in the boot and systematically disposing of them.
To get into the swing of things I randomly selected a theme from the relaxing ritual list. After selecting the giggle frame I ended up choosing the ant farm. What a hoot! It suggests that I "Get an ant farm and watch how the ants seem to mimic the hectic human world. Isn't it interesting to watch how frantic to be productive they are, without taking the time to enjoy the fruits of their labor? Alternately, find someplace to watch turtles, fish or other slow animals that aimlessly just seem to take their time." This is a bit ironic given that my first ritual is to begin frantically laboring and straightening my nest up.
Well that is okay. I don't mind being like an ant for a couple of days. It helps me maintain the illusion that I am in control of my world and we all know that a few illusions are essential.
July 5 2000
From the seventh floor window of Epworth Hospital we can see the lights of Fitzroy twinkling in the distance. As I stood gazing out I could see the markers that help me orientate and identify where we live. The tower of the old Town Hall, a church spire marking a corner near our house, both help guide my eyes to where our house lies. Strange how so much can change in a mere twenty four hours. On the same day that we arrived home from Sydney I rushed my husband Darryl to the hospital with groin pains. Eight hours later he was being operated on. The surgeon removed a swathe of bowel and looked at me with grim, penetrating eyes, eyes that spoke of hard times to come. The fragile thread that Shakespeare wrote of seemed to be strung around me and cold daggers stabbed through my body as I returned the gaze, questioning. Like Morse code his eyes sent a clear message, so easily read, a message that sent concentric ripples through us. Our quiet pond was changed, about to be invaded by teams of people wheeling machinery hooking up drugs and saline drips. The poking and prodding has begun and we are on a conveyor belt that will see us passed through so many places. We are locked into a small city with hierarchies that are interconnected and will now dominate our lives.
The rituals I had written about seemed far removed as I stood looking out the window. Watching what is happening around me is like watching ants. But these rituals will help me maintain an illusion of control in a world that is now out of my control. They will help me as we raft through white swirling waters.
So I carefully light a candle and call my muse to come down from Mount Parnassus to be with me and give me the strength to weave words and tell my truth, exorcise the pain, the grief and trauma that threaten to suffocate me. Words are all I understand. They are the one constant, the one thing I can be sure of, can trust. They will gather and form an army and help me infiltrate and proliferate those cancer cells.
Operation Desert Storm move over! A more important war has just begun.
July 6 2000
Yet it was total strangers who listened and asked questions and held her hand when the roof of the world seemed to have fallen in.
Coming to grips with being so many different people, so many emotions, is confusing. So, as I have sat guarding the bed and watching like a good watch dog, I have taken to thinking about all the networks that I have access to. I am beginning to see things through different eyes. I have eyed one friend and reminded myself of her superb nursing skills and looked at others and thought that yes, they could help find someone to run Darryl's business over the next three months. Then there are those girls from palliative care who I worked with, teaching writing skills.
Between everyone there are such skills to draw upon. And, they are all asking to help. They don't know how they can help! They just want to be directed and told what to do.
But then there are these other people running around inside me who I need to sort out, who all want to be a part of the action, who want to have their special skills identified and utilized. The narrator doubles as a casting director, a skilled production manager who can recognize talent and flair and can recognize the right person for the part. The militaristic warrior understands that she needs a few buckets of water thrown over her to make sure she doesn't shut out all those skilled friends and relatives out so she is being reminded that every army needs a strategic planner. Meanwhile the matriarch knows that sitting quietly and going with the flow is what is best. So she is quietly lighting home fires and stoking the hearth. She has already taken leave from work for at least ten weeks.
What am I rambling on about? I hardly know my name right now. I am so tired I can hardly think straight. Why am I coming home and sitting writing like this when I should be sleeping? Is it that illusionary control again? I will, seemingly do almost anything to regain control. I just want Clotho and her sisters to come and tell me the story they have woven for me. But then I am frightened that the story line will not suit the cast I have. What a mess!
A voice just whispered that a therapeutic bath, in a darkened room with some candles and some music would be a good idea. Maybe if I have that I will sit still for two seconds and let my body rest. Jo has reminded me about a Japanese Bath - my second eldest niece says she will be in that. Perhaps I can wash it all away and cleanse myself and purify myself.
Yes! That is water running right now.
July 7 2000
It is my mother's birthday today and my daughter turns twenty one on Monday. There is life with cancer. That is the bit the surgeon didn't explain when he told us that our main priority is to get Darryl well enough for the next burst. He didn't say how you are supposed to fill in the hours between appointments. He didn't give any helpful hints about what to do when it feels like the grim reaper is following you about or when the ravens that descend on the spire outside the window look horribly like vultures circling. It is all very well being positive but there is the danger of using positive thinking strategies as some kind of gag to stop folks expressing the anger and pent up rage which rolls through the body in waves. I know it is pointless asking 'why me?' when it is just as easy to ask 'why shouldn't it have been me?' Bloody hell! Everything now hinges on organics, on whether Darryl's body responds in a particular way.
I could ask whether the lymph gland infection is at 1, 2, 3, or 4 to really make my day. Stuff that! I got the worst scenario on Sunday night. Sunday night we were looking at incurable. It doesn't get much worse than that. So I will be happy to stay a little in the dark and pray it is somewhere between the two and that the body reacts positively when it gets zapped.
This is not happening! Sometimes when I visit I wonder whether it is just a cold - or a virus. I mean Darryl looks really well. He is weak after the operation but he has plenty of colour.
For the first time in five days I went to the bank to organize bills that kept coming. Can you send them a 'hold on while I wait to see if I will be dead next week?' Cause if you can they can all wait. Stuff them. Anyway, I had to do everything slowly. I was sure the young girl at the counter was wondering about me. But then it turned out that she had been through a lot with her parents and knew how I felt. She was kind to me.
I kept playing Rod Stewarts 'Have I told you' as I drove around - just to give me something to really howl about and stopped and bought a red rose. It is all a bit mechanical right now but I am sure that is nature's way of protecting me. Fickle bitch! A whammy on one hand and a pain killer with the other. Weird eh!
Oh! If you are still reading this and have some bright ideas about what you do in between appointments drop me a line. But skip the 'be positive' bit, and don't placate me, or I might be forced to slap you. You can always say I don't know, and offer to get back to me when you have thought about a real answer.
July 8 2000
The nurses have left me alone to come and go and stay as long as I like. At one stage I could have gone on the payroll because I was providing constant care. Now, as Darryl gets stronger each day I am taking some time off each day to have to myself. It was a bummer having a bingle in the adjoining street tonight but the poor woman was clearly distracted. A dent in a car does not seem significant in relation to everything else that has been going on. I know we can fix that. I wish the oncologist could give us the same grantee. The surgeon has done his bit - I just pray that the rest of his body has not been invaded by an army of commando style cancer cells.
My pace has slowed right down. I actually stop and do things slowly and methodically at the moment. I do not have the strength to go fast and anyway, nothing else is that urgent.
I think they will start selling tickets at the door. Family and friends have descended and the room looks like a garden with potted plants filling the window sill. Beautiful, happy, energized plants smile at us.
Oh hell! Will some one wake me up now and tell me it is not happening. Many of my students like to finish their stories with a 'and then I woke up' line. I tell them not to do this because it is better leave something for the reader to think about but now I just want to write 'and I woke up and it was all a bad dream'.
July 9 2000
My first born turns twenty one tomorrow and I am so proud of her. She has been a tower of strength over the past week. As a Cancerian she is a very private person so she genuinely did not want a fuss. I remember when she was nine she wanted to crawl under a seat when everyone on the boat in the fun park sang 'Happy Birthday'. Even the idea of a cake at the hospital was enough to make her turn white. So I respected her wishes and tonight she and I had a quiet Thai dinner together. When we got to her father's room she spied a gorgeous arrangement of orange and purple flowers and said that it was "good to see that someone had really lashed out on the old man." We watched as she checked out who the sender was. There was a broad smile when she saw the arrangement and exquisite chocolates were for her. We are giving her an airfare - one way we joke - to the destination of her choice. Hopefully her birthday will remembered in plenty of positive ways.
A cancer diagnosis is enough to make you really focus and Helen, like her father and I, is being as pragmatic as possible. At least the children are semi independent now. I really only have to look after Darryl and myself and after ten years with a smorgasbord of crisis this is a relief. Tonight over dinner I talked about how my leave would include lots of time for me and what a relief it was to have a spell for awhile. It will not be any hardship for me to sit waiting around the hospital. I will have my kit bag packed with everything I need to amuse myself.
This afternoon I looked at my garden and thought that it would be a good time to get out there and replant and nurture things. Gardening is always good for the soul. There is nothing quite like getting dirt up to your elbows and to look back at freshly turned garden beds and pots. Similarly I will cook up some storms. The smell of fresh home cooked food is always restorative.
It has not been too hard to maintain this site, which is a bit of a life line for me. I usually wander in early in the morning and again of an evening. All my efforts mean that I now have a structure which I am simply building upon. In some weird way the cancer has added a new dimension - helped me to identify why writing is so important to me and why I feel driven to gift my work. It is as though I have established a Bank. My bank is the Mount Parnassus Branch and it is thriving. The currency that I have stored here is worth so much more than what is in a normal bank. Whatever I have given is being returned ten fold - the interest superior to what I can get anywhere. I am sure one of the reasons that I am so calm at the moment is that I know I am surrounded by kindred spirits who will provide whatever I need to face whatever comes.
I must say that today I played the sound track from 'The Singing Detective'. Those wonderful tunes from the war years reminded me that my parents generation were accustomed to looking for the silver lining. 'Accentuate the Positive and 'Tomorrow is a Lovely Day' both raised my spirits. Similarly the old 'Into each life some rain must fall' reminded me that we are not alone and that there really is no other explanation for what is happening.
July 10 2000
It had to happen. Today I felt really twitchy and flat. Adrenelins have helped to keep me going over the past week but now I am weary. The trouble was that I permitted myself to project ahead and think about what may eventuate and that is utterly fatal. We know a lot of people who are living on after bowel cancer but we also know some folks who were not so lucky. A close friend died of the same condition just last year and the onset has been horribly similar. I can see it is going to take discipline and determination to keep ourselves distracted and to go on believing that it will be okay for us. There are no magic words that I can produce out of the hat to allay the pain and the fear - which is dispiriting because I have always been able to rely on my words to palliate and soothe. Suddenly there is this silence as I absorb the truth and face it in the dark, early hours of the morning.
Yet love, sprinkled with laughter seems to provide temporary relief. Tonight Helen and I arrived to find Darryl's room full of laughing friends. Darryl was holding court, entertaining them with stories about his 'poo bag' and how 'he had poo from ear hole to bum hole' and thought he might end up redesigning the colour scheme in the bathroom if he laughed too much. Then he waxed lyrical about how, when we went for our daily stroll around the ward, we couldn't help overhearing the vivacious nurse wrestling with Harry, an elderly Fijian to put his clothes on. "Now Harry" she was saying "we wear clothes in hospital. It would be alright if you were Brad Pitt darling, but your not, so come on and let me get this back on or we will have to get Speight down here." Darryl had to hold his colostomy bag he was laughing so much.
Hospitals can have an eerie silence about them but laughter and love is vibrating out to the nurses station from our room. When we holiday at Narooma the raucous laughter as we play pictionary has bought the odd complaint from campers trying to sleep and I never forget that we had the head netball voice tell us to barrack more quietly when the girls were in primary school. So I could just see management arriving to tell us to quell the laughter and quiets us down. I bought Darryl a big bag of chocolate frogs and told him to distract the nurses with one of them. It seems to work.
Rabbi Earl Grollman said that "Courage is not the absence of fear and pain, but the affirmation of life despite fear and pain." I have long been regarded as courageous but this is going to really sort out what I am made of. Tonight I am not sure where the courage will come from so I thought I would send our a visual primeval scream.
July 11 2000
I just want to get Darryl home now. He is one cranky, confined little pixel who has had enough of being poked and prodded and lying in an uncomfortable hospital bed. Being trapped in a hospital room is no fun at all. At least I could escape. My good friend Jo joined me at the Japanese Bath House and my sighs as I sunk into the hot tub bordered on the classic scene from 'When Harry Meets Sally'. It was ecstasy. The bath seems to have purged a lot of tension - as did the sounding off. There is nothing quite like letting it all hang out and ranting about what a bitch life is.
A cancer diagnosis gets you focused and provides a very clear long distance view. Folks are comforted by how positive we are being but I would describe our current state as numb. Don't be deluded by the popular 'be positive line'. Positive thinking is not a cure, despite what people want to believe. I am not even so sure that you improve the quality of your life by being positive. It is simply another denial strategy that lets everyone off the hook. If you don't actually say you are dying no one has to face death do they? They can leave the hospital and slip back into their normal routines deluded by the mask.
Difficult as it is I am trying to live in the present moment. The present moment is safe. In the present moment the truth is that they have cut out the diseased bits and Darryl is cured. In the present moment we just have to get him well and back on his feet - ready for chemo. In the present moment you cannot see any army of cells marching victoriously through his body. In the present moment we are surrounded by loving friends who are being cheerful.
But just nearby is a big black pit that is the future. Within that pit are a writhing screaming group of demons who ask questions like 'what if the cancer has travelled into the blood stream?', 'what if I get an ominous symptom?'. When you are sitting close to the black pit it is not so easy to be positive. Near the pit your remember the ones who did not make it - the gaunt look as they wasted away. Near the pit you are reminded of the finality of death, the ultimate separation.
Like dogs the pit senses fear. If a dog prepares to attack you need to stand still. Near the black pit it is best to be silent. Near the black pit there is no control and platitudes are gobbled up by hungry monsters. Next to the pit a positive spin and carrot juice offer a feeble shield.
It is only silence which provides a protective shield. So I sit silently, watching waiting. No idle words. Silently we hold hands and the shield strengthens.
July 13 2000
When Darryl's bowel remembered that it really wasn't very well it promptly refused to digest anything and made him throw up a lot. The combination of nausea, managing a colostomy bag and altered electrolytes (whatever they are) resulted in him becoming depressed. I had my chance to have some good howls in the first days but Darryl hadn't. Trust me! Crying and being angry is positive. I held his hand and told him to let it all hang out because like him I am bloody angry and upset by what we have been confronted with. Neither of us want to be cheated out of our latter years or our dream of heading off in a refitted forty foot coach to wander around Australia.
Then today it seemed to take ages to be discharged and we both ended up with jagged nerves. But now that Darryl is home and the lap dogs have begun doing what lap dogs are trained to do, Darryl is improving again. The odds are in our favour but statistics are small comfort when you know that others have not been so lucky. One of our camping companions died just last November after falling ill with the same condition so the Narooma group are none too happy about the news.
Faith that God is in the hands of the Surgeon, our Oncologist, the nursing staff and our General Practioner is what we are clinging too right now. With all the crisis in the world I figure that the good Lord needs some expert helpers. So I am comforted to be able to put my complete trust and faith in the preparedness of these skilled professionals to do all that is humanly possible to beat this disease. They will
Now it is a matter of living and affirming life as we go through the next stage. While I am on leave I plan to attend to my hearth and look after the house and do my writing. I have been looking out the back yard and can see that there is a lot to do out there. I also want to do a spot of clearing out the clutter. Getting one's house in order seems a perfectly obvious way to get some control back.
During the many hospital visits I know that there will be a lot of time sitting around so I have begun packing a brief case with all the things I need to keep myself occupied. Lucky I am well practiced at this sort of thing. I will always have a supply of pens, paper and reading materials. There is nothing like a spot of writing to distract you and help the hours disappear. If nothing else I can always write a list of the things that need to be clarified before we actually go in to the appointments.
July 14 2000
There is nothing quite like a cancer diagnosis to make you refocus. Thirteen days ago the surgeon suspected we were dealing with an incurable cancer and the shock and trauma of that sent shock waves through my clan and networks. Now things are looking better! Darryl is at home and looking brighter by the minute, the statistics are more in our favour and we have instantly re-prioritized.
I thought the 1990's were a pretty dark time. The crisis we faced, one after another, read like a black comedy. It started with corporate style cuts in Darryl's workplace and just kept going. As we staggered and reeled with each new knock we endeavored to change our values but always had to take into consideration that we had two children and needed to live. We had made choices about education and lifestyle that influenced our decision making but gradually we shed layer upon layer, in an endeavor to make life easier. I burned my resume and destroyed all hard copies. There was no way I would continue to play the games that were promoted by the former government here in Victoria. Tired of being a puppet who danced the familiar tune I relinquished my positions and stepped back from all responsibility within my workplace.
Only recently I commented to my brother that there were now only two places to be in the workplace - the Chief Executive Officer or an Indian. I had chosen to be an Indian. Then came July 2 and the grim eyes of a surgeon bearing bad news. His eyes spelled out the worst scenario imaginable - that my much loved husband and I would be separated by a disease that had taken a strong grip on him.
I may have shed some layers in my time but now I stand naked, acknowledging that the last links to mainstream must be severed. Our priority now is to make sure that we do not feel cheated. So, to cut a long story short, we are about to start living and doing any of the things we have dreamed about. I will not put myself under undue stress by trying to be a superwoman for another minute. I will not squander what time we have. I will not stand by and watch a man whose Christain work ethic has shaped his life relinquish another thing to meet societal expectations.
Move over Thoreau! I am about to go to the woods and live deliberately. All you need to do is watch this space to check out how I go about it.