From wellness to sickness in one afternoon

Right now, I look fabulous. I have a full head of hair; my gums and fingernails are pink; I’m nice and plump. Next week, I’m going to have to surrender this wellness. I’m going to have to walk through a door into a big room full of comfortable blue recliner chairs, sit myself down, and hold out my arm to receive my poison. After that, my hair will start to fall out, I’ll feel sick, I’ll look sick. Time to howl at the moon! Yes, despite all my preventative surgeries, I’ve been unable to outrun the effects of this BRCA1 gene mutation. I’ve been diagnosed with primary peritoneal cancer: rare, advanced, aggressive. You’ve probably never heard of it, but you may have heard of its close relative: ovarian cancer. Arrrrgghhhh. And I mean arrggghhh. Not the light-hearted arrgghhh of the car won’t start or the computer’s crashed. I mean the big-time, loudest-volume arrrgghhh; one that can be heard down the end of the street.

I’ve been wondering whether to blog about this thing. After all, it’s a great story, with a strong first act turning point, a second act full of advances and retreats, hurdles and hopes, and a third act … As a writer, I’ve got something juicy right here, right inside my guts. All I have to do is spill my guts and I’ll have something. On the other hand, it’s hard to go public. It’s been hard enough as it is, dealing with the waves of sympathy and concern from close family and friends. I’ll be pottering along, forgetting all about it as I compose a tweet or delete penis-enlargement spam, when I’ll get a call and suddenly I’m right back inside the wailing and gnashing of teeth. Going public – letting “everybody” in on my story (my seven blog subscribers and whoever else randomly lands here) could be a big mistake. And yet, I’m doing it. Writing is a compulsion, and a comfort, and to write properly I need at least a sense of an audience, if not an actual audience. So here we are. Let’s see what happens.

So, what happened? Just like countless women with ovarian cancer, I did have strange rumblings and twinges and oddnesses and feeling tired and wanting afternoon naps. But like so many women, abdominal discomfort was nothing new for me. So easily discounted, so easily put down to other things. My father died last June, and there was the funeral, and other family emergencies and problems, so I put my tiredness down to grief and stress. I put my naps down to laziness. I thought I had a gastric bug. But all so mild, no big deal. It’s only in hindsight that I can see what was going on.

Meanwhile, I’d emptied out my pink BRCA1 folder with all its warnings and information and dates of surgeries and reassigned it to “Planning”. Planning as in, goals and ideas. Good use of a newly empty pink folder. Having had preventative surgery (breasts off, ovaries out), I truly thought I’d sorted my cancer risk. I vaguely knew about the risk of other cancers associated with the BRCA1 gene mutation but these risks were tiny. For example, only one percent of BRCA1 carriers get primary peritoneal cancer. So I wasn’t going to worry about that. No, my vague symptoms had to be related to something else. Maybe I had a thyroid problem? I convinced my GP to send me for thyroid tests. All normal. Maybe the hormone replacement medication I was given after I’d had my ovaries out (a “bilateral salpingo oopherectomy”) wasn’t settling properly. Maybe I’m just lazy and really enjoy naps. Because I worked from home most of the time, I could sneak them in after lunch.

I was in my GP’s room for something else when she exclaimed that I was as white as a sheet. Yes, I’d noticed that morning, in the mirror, that I was looking a bit pale. She sent me for a blood test, and then called me personally because my haemoglobin count was down to 80 when it should be about 112. Bizarrely, she was talking about a blood transfusion if it got much lower. I set off on a three-day video shoot. I was now beginning to feel as pale as I looked. Everyone else did the carting of equipment. When I got back, I had a CT scan of my abdomen. This involved drinking a radioactive substance and going in through that big white talking doughnut machine (“breathe in, and hold” … “you may now breathe normally”). I was still not overly worried. My friend Dawn was for some reason driving up from Canberra to be with me as I got the results. I thought this was a little over the top but I let her do it. I sat in the waiting room, waiting for the radiologist to come out with my scans. I did not like the look on his face. It was the face of a concerned person trying not to look concerned. He handed me the CD and said, in a tight little voice, “Stay in touch with your doctor.” Now I was worried. Dawn would be arriving soon. I was not going to run home and peep at the scans on my computer. I was going to go back to the GP at twenty to five with Dawn in tow, to hear my results.

My GP greeted us cheerfully – things can’t be that bad – and then we got down to business. She assumed I’d seen the results in the meantime and so she picked up the thread way further down the line than we were ready for, plunging straight into a chaotic discussion – chaotic because interrupted by alarmed questions and clarifications – about two tumours, one up near the stomach and another down low in the pelvis. The what? The two what? Tumours? At this point I couldn’t bear to hear more. Dawn grabbed the piece of paper from the doctor and read it silently, because I was saying I couldn’t bear to hear too much detail. Forget the detail. Detail is cruel.

When Steve got home from work they went into a huddle because I still wasn’t up to the detail. Dawn talked him through it. Then what did we do? I can’t remember. I was passing from one world into another: from the world of the well into the world of the sick. On January 25, I wrote in my exercise book: “I am marked. I have an X on my door. I’m a tree that has been sprayed in flourescent pink paint, waiting to be lopped.” I spent time in the Bathurst Base Hospital, getting blood and iron transfusions that immediately brought back my pinkness, being visited by friends, getting flowers; I was sent in the front passenger seat of a patient transport vehicle – chatting to the nurse and driver all the way – to Westmead Hospital in Sydney, where I was parked for about a week while they tried to decide what to do with me; I listened to the stories of my fellow patients, all poignant; I listened to lonely, needy people who would start talking as soon as you caught their eye, talking, talking, talking because there was someone there to listen; my sister Deb and Mum and seven-nearly-eight-year old Max visited, bringing knickers and three sets of new pajamas; friends visited; different doctors appeared at my bed asking me to tell the story of myself, again and again. Another scan. A biopsy. The results. Specialists. Steve was with me all this time, or most of it, sitting in chairs for hours while I got to lie in the comfy bed. Mostly, we waited. We waited for doctors, we waited for news, we waited to be admitted, we waited to be discharged.

I was let out into the world for some of this waiting. We stayed with Larissa in Newtown, with two kelpies. The colour and diversity were kaleidoscopic after the greys and whites and beiges of hospital. I loved everything: Larissa’s tanks of rainbow fish and guppies, fresh cherries, sunlight filtering through leaves, the sound of rainbow lorikeets supping on the grape vine, people, dogs, the tiny Belljar cafe in Alice Street. A drive to Coogee Beach, with intense blue sea, intense blue sky, white sand, waves crashing on rocks, seagulls sipping on fresh water running out of a drainage pipe. Camp Cove beach. Bradleys Head with Mum. Colour and nature. The sea. Rocks. I just wanted to sit and watch timeless water crashing against timeless rocks.

So, what’s next? Next week I start chemotherapy. I’ll have three blasts of it at three-week intervals. This will be administered out of the Crown Princess Mary Cancer Centre at Westmead Hospital, so we’ll be driving back and forth (about three and a half hours each way) and staying on and off in Newtown. The idea is to shrink the tumours down so that they are easier to operate on. Then there’ll be my big “debulking” (horrible word, but that’s the one the doctors use) operation and recovery. After that, another blast of chemo to mop up. None of this will be pretty, but I do feel I can cope. I’m up for it.

23 thoughts on “From wellness to sickness in one afternoon

  1. Flea

    The X on the tree image is really poignant. It’s a weird combo of the Jewish ‘mark on the door’ thing with the plagues and locusts and just simple arbory (what’s the noun for what arborists do). And it’s also very still. “Why did I wake up with an X on me? I’ve been rubbing it and it won’t come off… Steve!? Did you see who came and sprayed this? I must have been napping?”
    It feels like you’re going down the rabbit hole. But we’ll be happy to fall along side you whenever you need.

  2. Kay

    You are a beautiful, stunning writer Tracy… Thanks so much for illuminating your journey for the rest of us!

  3. Louise Mustard

    The blog doesn’t seem like a mistake Trace. I really appreciate that you’re doing this. It is really beautiful writing and apart from being a therapeutic way for you to explore and express your feelings it is also perfect for helping everyone around you to understand what you’re going through. Its really hard to know what to say or how to be the best kind of friend at a time like this, particularly if you’re a long way away. Reading this makes me feel like I’m talking to you. It puts things back into perspective because it is so honest and real and quintessentially ‘Tracy’ and opens the door for meaningful communication instead of sympathy. Thank you x

  4. John & Rita KELLETT

    Tracy, thank you for sharing the story. You are one beautiful and gutsy person. We hold you and Steve in our thoughts and prayers. Love John & Rita.

  5. John Merkel

    Dear Tracy,

    Your friend Louise summed up some of my own thoughts about your decision to blog. I think it’s a great idea that’ll be as helpful for all of us as it (hopefully) will be for you. I’m especially glad that you described exactly what kind of aaaargh! experience you’re having. It’s important for us to hear it right down the street – and even interstate. I mainly know the gut wrenching pain of the aaaargh! moment one step removed, as the father of an ill child, which I know is very different to facing my own mortality.

    I mentioned to you in a recent letter what a wonderful and creative sounding board you are (I think that means you’re a really good thinker and listener). Maybe we can be a bit of a sounding board for you too, in this little corner of the blogosphere.

    Love John

  6. John Merkel

    … and i did like that last short sentence “I’m up for it.” It seemed to distill a lot about your character in general, and your attitude to your current predicament, in particular. jx

  7. Marianne

    Thank you for blogging this, Tracy. You are such a powerful personal writer. Whenever you feel like writing , I can guarantee you an audience

  8. Dawn Nusa

    Dear Trace
    Thank you for writing this blog. Its like we all get a precious gift: a peep into your beautiful soul.
    Dawn xxx

  9. Tracey

    Re: Song for Trac
    There’s so many in the blogoshpere, Bathurst and beyond who are connected by the purity of your voice Trac – its warmth, wit and luminosity. May it be your great strength to beat this latest challenge and win a long and ‘lustrous’ life.

  10. John Merkel

    I was leafing through one of my favourite books on writing this afternoon and this passage made me think of you. Hope you had an ok day. jx

    The love of story—the belief that your vision can be expressed only through story, that characters can be more “real” than people, that the fictional world is more profound than the concrete. The love of the dramatic—a fascination with the sudden surprises and revelations that bring sea-changes in life. The love of truth—the belief that lies cripple the artist, that every truth in life must be questioned, down to one’s own secret motives. The love of humanity—a willingness to empathize with suffering souls, to crawl inside their skins and see the world through their eyes. The love of sensation— the desire to indulge not only the physical but the inner senses. The love of dreaming—the pleasure in taking leisurely rides on your imagination just to see where it leads. The love of humor—a joy in the saving grace that restores the balance of life. The love of language—the delight in sound and sense, syntax and semantics. The love of duality—a feel for life’s hidden contradictions, a healthy suspicion that things are not what they seem. The love of perfection— the passion to write and rewrite in pursuit of the perfect moment. The love of uniqueness—the thrill of audacity and a stone-faced calm when it is met by ridicule. The love of beauty—an innate sense that treasures good writing, hates bad writing, and knows the difference. The love of self—a strength that doesn’t need to be constantly reassured, that never doubts that you are indeed a writer. You must love to write and bear the loneliness.

  11. Peter Downie

    Thank you, Tracy, for allowing us to share your journey, through your elegant writing. As Dawn said, ” a peep into your beautiful soul.” You and Steve are in my thoughts and prayers.
    Peter Downie

  12. hilary

    I only know you through twitter, Tracy and from your often lovely comments about my photos. I remember when you were recovering from your radical surgery and thinking, how can i help when I don’t know you, so I will just be normal… if that makes sense!? I shall be in Westmead next week and if you are up to a cup of tea (loose leaf only!) it would be lovely to meet you, the woman!

  13. Tony Savdié

    Well, despite the preventative surgery, it seems you are in for a big heavy aaarrrgh struggle. I’m sorry to hear it, but I’m glad you chose to keep us in the loop. There are many many things we can do and say, including be quiet and be there, never mind the kilometers, as a team of hard-core groupies who will buy all the jerseys and go to all the games, learn the words to all the songs and walk with you all the way.

    (It occurs to me that a big part of the struggle is going to be managing the rest of us, who will want to comfort you and who will end up needing comfort ourselves. You’ll need to be reminded that this is not your task. We can and will find our comfort elsewhere.)

    You seem to be going down the medical road, and before flooding you with links to largely whacky but sometimes helpful complementary therapies and wiki-commentary, please let us know what you would like. If you dont yet have a good grasp of what that is, apart from not cancer and no chemo side effects, we will wait, attentive and serene, to know what the best way might be to buoy you forth on a magic quilted carpet of love.

    For now I wish you all the strength you need and all the patience to deal with the feelings and emotions that this (really shitful, I just gotta say) news is bound to be causing. Try not to forget how very much and very lovingly you are being thought of and how well-surrounded you are.


  14. Traci

    my friend Tracy whom i have know since primary school, what can i say ,,,,, sending you lots & lots of positive thoughts your way on your next journey of life, boy life sure does throw some curve balls, but i know with the support of your family & friends and your writing you will be strong and fight this , thinking of you,, Traci xx

  15. Dave Sampson

    The suddenness and the shock erupting from the ordinary and your determination emerging – you’ve expressed it so beautifully. That’s appropriate from such a beautiful and giving person and such a fine writer. As long as you feel that blogging is the right thing for you, it’s a privilege for us to share. If you ever feel like a cuppa in Marrickville or Newtown please give me a call. Everybody’s on your side. xx

  16. vivchook

    You write so beautifully, Tracey. Thank you for opening up your innards to us all. As Tony has said, I will have to find the comfort I need on hearing this news, elsewhere. I hope I can offer you some of the comfort you might need, by reading this blog diligently. That’s something I can do for you – provide you with an audience for your thoughts. xxxx

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