Tag Archives: BRCA1

Last night I was a red head

The thing about baldness is that you have a blank palette from which to begin to create new looks. I’ve never been much bothered with new looks – I wore straight brown hair parted down the middle forever – but now that I’ve been led here by chemo-induced baldness I’m quite enjoying it. I went to a friend’s place for dinner last night in a cloche hat and curly red hair and a big green vintage coat. I watched as a very close friend’s eyes skated over me without recognition. I was invisible; someone new; someone else. A fly on the wall; an occupier of liminal space. But then she did recognise me and everything jolted back to normal. We resumed our long-running discussions about art, illness and crochet.

Then I hobbled home in the dark. My left knee has been giving me hell. I think the chemo is eating away at my cartilage, or I have fluid retention, or something. And so I return to Dr Google, typing in search terms like “sore knee chemo” to see what others have to say on the subject. What they say is that chemo often causes sore knees. Besides the knee, I’m in a bit of a dip all round. Everything is an effort, today. I’m in slow motion. Next Wednesday, I’ll be having another CT scan to see what the three rounds of chemo have done to my tumours. I’m alternating between confidence and apprehension.

Last Tuesday, after a wild weekend with my relatives (enjoyable wildness involving two small boys, possum hunting and a dramatically crashing and splintering glass object in a shop that had to be paid for), I took my Waste to Art entry up to the Flannery Centre for the exhibition that opens tomorrow. As a work of art it’s lumpy and unresolved (aka ugly) but as a project it has been enormously satisfying. And through it, I’ve discovered pen and ink! The kind you have to keep dipping into an ink well. Oh fun! Oh beautiful scratchings! Here it is:

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.