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Saturday, November 26, 2011

Demon Days 2

33% of the way through my chemo treatments and I log the transit of this second phase with some trepidation.

Day 2: I feel dizzy owing to developments previously mentioned in 'Antarctica' with my haemoglobin count lower than it was after my previous treatment.

Al goes off to a golf day to raise funds for Breast Cancer Research at Brookwater Golf Club (where my friend Ann works) and with my blessings.

I'm left at home with Ben who has a pupil free day. I lounge around on my bed, then snooze outside on the deck, enjoying the breeze.

Nim texts me and rings to see how I am. Chris rings to check on my progress.

I have painted a picture for her and couriered it down on Wednesday - a little thank you for being my mentor and besides, Christmas is coming up. I've made a pact with myself to try and create something beautiful in each cycle of my chemo. Painting is an outlet for me. I find it therapeutic and I get lost in it.

Lyndal, who is a professional artist, wrapped it up for me using her own packing materials so I am pleased when Chris texts me the picture as promised, on safe arrival. Here it is hanging on her wall, with her two little kids, Charlie and Abby, standing in front of it. (They have only just built a chicken coop and Betty the chook has proved to be a prolific layer - Chris says she loves it and it's appropriate :))

Lee comes round to give me the dreaded injection (alas, it hurts like buggery again but this time, I know what to expect so I manage to focus on something else). She brings me lollypops and two lovely new head scarves.

We lie on my bed together and plot our trip to Nepal. We discuss my desire to end up as a 'B' Cup after I have a grope of her breasts (she's a C)... hey! I told you we were close :))

Al gets home bearing a $1000 Qantas Travel Voucher - he played golf badly but scored on the raffle. It's the third overseas holiday my man has won over the years. At least one of us is lucky :))

Lee leaves and all of a sudden, I feel a bit down. She looks so gorgeous in her lovely dress. Why can't I look like that too?

I don't know why. After all the laughter yesterday, suddenly I feel like curling up in a ball in the corner. I recall the advice of Sharon, my lovely Facebook mentor who has cautioned me to "look after my heart and my head." I think I see what she means now.

When Janet rings, it perks me up a little as our conversation ranges over the predicament of consultants. Talking about work takes my mind off things.

But when she hangs up, I'm in a funny mood again. I sense I'm not in a good place.

Day 3: The symptoms of nausea are worse than the last time and I'm not convinced the medications are working as well. I feel generally poor all day.

I am sweating a lot as it's a steamy day, so once again, I go and lie on the deck, doing my own scene from "Beaches" sans Bette Midler and enjoying the fairly blustery breeze cooling my scalp.

Craig comes round for a quick chat. Garry drops by from next door, as Craig leaves. He is leaving on a long surf trip on Greg's boat, "Addiction" tomorrow so he's come to say good bye.

As he leaves he says, "Can I kiss you?"

I say, "Yeh, kiss me on my head. Then rub it three times and I'll grant you a wish."

I feel nauseous still and go and lie in bed again where I doze.

Harry arrives home and I can't believe it but his shaved head has already re-foliated (if there's such a word) and then nicks off to the skate park.

We have a short chat and he drives Ben off for a sleepover at a mate's place.

Al pops next door for a few rounds of tennis with Garry. At this point I am alone. I lie in bed, sagging into my situation.

I decide that somehow I must get up and go for a walk. I manage a slow 2.8 km. Coming up the short slope to my house, I have to stop four times.

In the evening, I attend a fundraiser organised by our friends, the Coopers who live just down the road a bit. I go on my own because Al has to attend a presentation night for the Redland Bay Tennis Club. I wear my wig and have a pretty good night in the end, lasting four hours! What a champ!

When Al gets home, he bears three trophies. One inducting him into the Club's new 'Hall of Fame' (Reddy Bay Tennis Club is one of the oldest sports clubs in Redlands if not Brisbane. Hey, it's quite an accolade!). There are also two awards for Ben, a child with the competitive drive of a Centrelink queue, who won the A-Grade title this term and Runner Up last term.

Day 4: A stinking hot day and I am covered in sweat as I lie in bed, retching. The anti nauseas don't seem to be working so I'm relying on eating small portions of food. I haven't got the recipe right yet so pass the morning feeling god awful.

I also notice I have some photosensitivity. My eyes are red.

Al goes off for an early round of tennis and has jobs to do so I doze on my own.

In the afternoon I get up and move to the deck where I doze with my eyes closed. I move back to bed. The fan whirrs at full speed. Al's had to pop into make up numbers at the Tennis Club AGM so he's going to be a little later.

Somehow I motivate myself to get out of bed for a walk,

Once I get outside, I'm surprised that I get stronger as I go. It's a lovely afternoon with a blustery breeze and I'm just enjoying being upright.

In the end I walk 6 km!

I think I'm doing okay except for the evening, when, I'm bilious again. Okay, I have to admit, I throw up.

I go to sleep with a bucket by my bed. Just in case.

Day 5: I lie in bed in the morning, watching 'Kerry Anne' and feeling squeamish.

It's a hot morning and my pillow is wet from the night before. Who knew a bald head perspired so much?

I find Kerry Ann dreary, perky, healthy! I turn the TV off and stare at the wall.

My mood is not good. I literally wish I could die. I hate the smell of myself and the look of myself.

The texture of this illness covers me like a fur. Al brings me a bowl of cereal but it doesn't seem to quell the queasiness.

I get up to check my emails and intercept a direction from my client - they're waiting on some copy so, what to do? I'm feeling miserable - maybe some work will take my mind off things.

And so I become immersed. For some reason, I can't concentrate long enough to read a book and struggle to watch a TV show through to completion, but when I'm writing, I'm in a different zone. I make good progress.

Despite the writing though, the undertone of negativity prevails.

Luckily my sister Nicky rings and says she's coming to take me for a walk. Seven hours later, I stop work.

Nicky, me, Lily and the twins stroll with three dogs in tow, a slow 4 clicks.

When she leaves, she accidentally leaves one of the pooches, Scruffy behind. He lies on Spunky's bed and really does look like Hairy McLairy. I wonder how he'd look if I put him on my head.

In the evening, Ben jumps in between Al and I to watch a bit of TV. He kisses my bald head and says: "I love you, Mum".

Day 6: Today my mood is truly foul. I work hard all day and, while the nausea lurks I manage to ignore it.

Around lunch time, my mum and Aunty pop round with some 'string hoppers' just for me. (They're a traditional Sri Lankan dish and I love them). I feel better after I eat a couple.

When they leave, I'm impatient and angry again because of the arctic sheaving down yonder. It's disgusting.

'I hate God, I hate my body, I hate everyone!' I rage.

A few people ring and ask after me and Al diplomatically advises that I am not in the best of moods.

My sister Fiona rings and we chew the cud. Afterwards I feel a little better.

Al and I go for a short walk and I apologise for being quite unpleasant for most of this week. I laugh and warn him it will just get worse. Poor man. Does he really know what he's in for?

Afterwards we to go the local Thai as I'm craving spicy food. My tastes have become peculiar. My tongue cannot fathom most tastes. Cheese tastes like slime. I fantasise about salads. I can't tolerate the idea of bread.

Still, thankfully, the nausea seems to have abated and I'm feeling slightly better by the evening.

Day 7: I'm feeling generally better but still a bit green around the edges. I'm also having some issues with my stomach etcetera. Let us just say, I am having a hard day at the orifice, every damn one of them.

In the morning I go to a breathing and meditation class at the Salt Therapy Centre. I love it and think I am vaguely getting the hang of losing myself in my inner space.

I think I used to do this a lot as a child and right through my teens. I was a hopeless daydreamer and would drift off into my own Narnia at the drop of a hat once upon a time. I'm hoping this ability will come back.

There is no better time to lose yourself in another world than when dealing with illness, methinks. In fact, now is a good time to have a dissociative illness: instead of spending so much time in the bain de salle, perhaps I am Charlize Theron, wafting down a red carpet, a vision of elegance.

After my class, I decide to finish off my Christmas shopping. I also want to buy some looser clothing. As a size 8-10, nearly all my clothes are clingy.

Now that I am bloated and wasting,lopsided and untidy, I'm thinking caftans, maybe sacks.

It's not a productive shopping trip. Roomy clothing seems to be made for larger people.

In the afternoon I go off to do an interview for an article I'm writing. The lady I meet turns out to be the goalkeeper from my soccer team, Robyn! Her husband, Daryl has been struck down by a mysterious virus and in June this year, found himself a paraplegic in a wheelchair.

It makes me realise that none of us are immune, from the hand of fate, that turn of the screw. Is it inevitable? I don't know.

For some people it seems, the path from cradle to grave is a sea of golden flowers, butterflies. But who knows? They may be standing on prickles while they're doing their Jesus Christ Superstar rendition through golden fields? Or they may be wearing really tight undies.

It is only as I drive home that I realise I've overdone it. I am completely spent and, to my dismay, I realise the bone pain has been left to lucky last. My legs are aching. They feel as they do on the home strait of a really long run.

And so I find myself here today, the first day of my zero immunity zone and the school holidays have started.

I don't know how this summer will unfold.

For a week peppered by moments of genuine self-loathing, there have been a few high points.

And despite everything, I realise I am lucky after all.

Because I know - and have always known (thanks to some sound parental brainwashing) - that I have a lot to be grateful for.

Thursday, November 24, 2011

Chemo 2

62 days after diagnosis I am home after my second chemo treatment. It's been a fairly stressful 24-hour period.

Yesterday I went for the routine blood test but I had the staff from hell - two women who couldn't find a vein and jabbed me 3 times, bruising me and finally managing barely a millilitre. I was traumatised as I felt trained monkeys would have done a better job.

As a result of this manhandling, I was anxious about the state of my veins and whether the chemo would go well. Especially the Adramycin which can cause severe tissue damage if it escapes.

Last night I slept poorly too, the insomnia exacerbated by heavy rain outside - and the fact I was expecting Harry home at midnight but the rascal changed his plans and didn't tell me!

When I wake up this morning I'm already a little exhausted. Still, Al and I leave in good time and get to the Cyril Gilbert Centre early.

Strangely, I am looking forward to the experience, NOT because of toxic chemical injections but because all three of my besties, Janet, Lindar and Tracey are ALL coming to sit with me.

I am looking forward to seeing them and it's the only thing I anticipate with pleasure.

On arrival I am led to Suite 20 and hooray! My nurse for the day is Ursula, who was the breast care nurse educator I mentioned in an earlier blog. She is the one who has battled breast cancer herself and I note, this gives her incredible empathy as she ministers to my needs.

Chatty, open and friendly, Ursula understands the need for positive chat, good information and creating confidence in the procedure.

Therefore, THIS time, the insertion of the cannula, despite the dramas of yesterday, goes without a hitch. One attempt only! Ursula places hot packs on my arms to ease my veins up. I've drunk copious amounts of water the day before to help the process along. So all is good!

Here is a picture of Ursula at work:

It hurts like buggery though and Ursula shows me how she knows the cannula is well inserted and expects no problems. She is awesome! From wo to go, she is synced into my concerns and knows exactly what to say and do to make this experience less stressful.

Ursula explains that the clear fluid that is injected first up contains steroids which are anti nauseas. This is the bugger that causes fluid retention, insomnia and increased appetite.

Ursula then tells me to let her know if I suffer any... she can't find the word. I suggest: "Dopey? Sleepy? Grumpy?" She gets it and says. "And no, not Sneezy".

"Aah" I jest, "The seven dwarfs of side effects." :))

She laughs. "Oh I can see you'll have no problems, you'll do great." I like to hear that.

Then the first of my visitors, Lindar arrives and Al decides to head off to complete the job at the Manpad. Lindar gives me a present of a large jewel that catches the light. Lovely.

Let me tell you a little about Lindar who I met at the tender age of 21. I had just started work as the Speechwriter to former Lord Mayor Sallyanne Atkinson, and Lindarrrrrrrr (as I call her, in gentle mockery of that unique extra 'r') started as the LM's Protocol Manager. Over the years, Lindar and I have shared some great laughs together while all along, I've known a woman with an incredible story to tell. Let's put it this way, she's a formidable style queen and always immaculately presented, yes. But Lindarrrr has Character with a capital C. In other words, she's had her ups and downs, her measure of life's little kicks and disappointments and has faced them with what I can only describe as equanimity and grace - perhaps too much grace!

Amongst her travails - and I hope she won't mind me sharing this - Lindar lost her beloved Dad to mesothelioma at the age of 55. I'm guessing she would have been about 38 years old then and looking back, I do feel like a pretty cruddy friend because I'm not sure I was there enough for her then. It was a terrible event that has made a deep imprint on my Lindar and so, now in the context of her profound care for me now, I am a bit pissed off at my 34 year old self for not being a little bit more on-the-ball (although, admittedly, I had a two month old baby at the time the brunt of this took place).

Just how much Lindar cares is revealed today. When Ursula begins to carefully insert the Adramycin, the "Red Devil", Lindar senses my anxiety. She grabs my hand and I realise she is CRYING! I don't know what to say so I joke about it.

"I seem to make lots of people cry these days. It's okay."

Our little moment is broken when now Tracey arrives, looking, I have to say, bloody fabulous. Held up by traffic and apologetic about being late, I'm touched that she has hurried to be by my side.

Tracey gave me a book as present last time, but she gives me ANOTHER one, beautifully wrapped and especially procured after much shopping around from the book depository. It's about how a woman dealing with breast cancer reads her way to recovery. As mutual book lovers, this is a book full of love and meaning.

Then Janet arrives after spending 25 minutes in a carpark on Moggill Road to get to me. She's taken the day off work especially and comes bearing a present that I think reflects the unexpected wonders of this day: chemo in my veins but the fears magically taken away as I've focussed instead on sharing stories and laughs with three of those of my many friends who have chosen to show me that extra care.

Janet brought me this 80s headdress, wrested from the bowels of her chest of beloved memorabilia. What do you reckon, mun? I be haulin' sum good Ufrikun mojo, ja?

But here is what else she brought. It's a letter I once wrote... to Janet and Bob's dog, Pete the Pointer, with who I shared a special bond. I loved that dog and here is a photo to prove it.

I have no clear recollection of when or why I sent this letter to Pete. I am guessing it was some time in my single years, late 20s perhaps. All I can say is re-reading it, I was laughing so hard I could barely recite it aloud:

If laughter is the best medicine, today I have it in litres. The time flies. I have good endorphins floating through my veins along with potent medicines. How different it is to what I have been expecting - nay, dreading!

As we prepare to leave, we take this photo which Janet later requests so she can show her kids, who are also worrying about my welfare. (Janet's 15 year old Georgia, even bought me a turban!)

As Janet explains, as only Janet can, in an email this evening: "I want to show them how fabulous you looked, reclining, like the Lady of Camelias, some heroine in a Victorian novella -or as it happens, a teen vampire romance, given the things sticking out of you." Here it is:

After a quick visit to see Dr Choo, Al has come to pick me up. In the car coming home, I'm quiet. I have terrible heartburn (thank you Taxotere) and I feel furry headed (thank you insomnia). It's different to the first time. I'm not chatty.

I want to go to sleep so I lie down as soon as I can, taking one of the tablets I've been prescribed for this sought of unpleasantness. Al puts on the meditation tape (a gift from Lorelei).

I doze but I don't feel comfortable so I get up to write this blog while Al has a snooze.

Ness calls me to find out how I'm going. I really appreciate her calls and tell her so. I know she's a busy working business woman these days. I don't expect much to know she is a dear and caring friend. So I tell her I love her and then: "I'm getting teary eyed so bugger off now." She laughs and we hang up.

Louisa calls so we go for a 4 km stroll. I'm pleased with myself! It's pleasant as we discuss a planned trip to Nepal next year - when I'm better.

(The steroids apparently have a kind of feel-good flow-on effect. I suppose I'm feeling it now.)

When I get home, Al's made me a margarita! I'm supposed to have taste changes but you know what? Stuff it! It tastes good.

Finally, there's a dinner of my mum's special Pittu and my favourite Chicken Curry (delivered yesterday).

What can I say. Today I have experience perhaps the greatest alchemy.

A day of potential terror has been transformed, by single acts of love and friendship, into a day of happiness.

There is nothing more I could need.

Monday, November 21, 2011

Hair 2

As anticipated, three days after the initial fall-out, a Sunday, I have my morning shower to wash my hair. My follicles dislodge at an alarming rate of knots as I smooth my palm over my scalp.

I decide to see how much will come out and persist with the smoothing, a part of my brain repenting the waste of water but what to do? Chris has told me that this is a tested repertoire.

My shoulders are covered in hair and bits are all over my face so I have to spit them out of my mouth. The dislodged hair collects at the plug hole forming an interesting pattern. It's pretty disgusting really:

Here is what it looks like:

When I emerge, I believe I look like a baby orang-utan - what do you think?

A baby orang-utan


It's embarrassing to report but you need to know that it's not just the head on my hair that has started to defoliate. There's a bit of DIY Brazilian happening in that part of my bodily geography I shall call 'Antarctica'.

Let's face it: the narrative of this illness is about the effects on a human body and I'm afraid, not everything about anatomy is pleasant.

'Antartica' itself has been the site of some strange developments of late as well. Unusual rivers occur out of season. There are remarkable deluges that are difficult to contain. Do you understand what I mean?

Part of me recognises what's happening. Chemotherapy is foisting me into menopause but this is no glacial shift. It is the sheaving of a continental shelf, a movement as massive as the separation of Laurasia and Gondawanaland. My Pangaea is being cleaved and reinvented.

As it is, I want to go to the shops, so I think I'll wear the wig, but the remaining hair still hurts like hell. I try a hat but that hurts too so in the end, I opt for a scarf.

The thing I notice is that I'm not self-conscious at all. I don't know why. I know I'm going bald, but all in all I seem to be handling it well.

That afternoon, Al and I are invited to the Neil's for drinks. The Baddileys are there and we have a lovely time, sipping wine with interesting conversation. No one comments on my scarf and I'm grateful that I am not required to reveal my shredding pate. (I tell you, I have classy friends!)

I have thought that 'Alopecia' sounds like a lovely girl's name, up there with 'Anesthesia' (wasn't she a daughter of the Tsar?) Soft, piquant, almost graceful. But the reality is, it's an unpleasant sight.

And so today, it is time, I realise for what is left on my scalp to be pruned and manicured. There is nothing that screams 'SICK!!!!' than a nearly-bald head.

Through the day I work on a painting.

Louisa comes to take me for a coffee.

I go for a 10 km walk, feeling the strongest and most normal I've felt for weeks.

I return home to dine on a fabulous Turkish meal, prepared by my beautiful friend Nim. (Today is her birthday, and she still found time to cook for me - even cutting the fruit salad into heart shaped pieces). Oh my god. Can I feel more blessed?

And then it is time.

I tell Ben that he can neaten up what's left and the boy runs off to grab the clippers. We go into the bathroom where Ben is chafing at the bit to do the deed.

As Al supervises, Ben gets to work and he is half way through before we realise: "Eek! Those aren't our hair clippers. It's the dog clippers". I realise that Spunky is observing the proceedings with a judgemental eye. No wonder!

Disgusted I dispatch Ben to get the human ones and, as the job progresses, I watch as I move from baby orang-utan to Mao Tse Tung to Egghead.

Here is barber Ben at work:

When he is finished, I reckon I look like a Choc-Vanilla Chup a Chup.

If only Deborah Kerr were alive we could romp around the room singing 'Shall we Dance'.

The amazing thing is that afterwards, Al does something unexpected. He puts his mane of hair forward and says "Go for it".

"NOooooo!" I shout. "You know how you are about your hair!" It's true. Throughout our marriage, Al has been obsessive about his hair style and, especially, containing the ravages of balding.

In fact, when we first met, he had this disgusting rat's tail which didn't last long once we got together - there was a ceremonial pruning that was universally applauded by his friends. (With one fell swoop of a pair of scissors, everyone of them acknowledged that Al had truly met the girl of their dreams... hahahaha).

So for Al to shave his hair is truly incredible.

We get to work with the clippers and I have to tell you, I haven't laughed so much in ages.

Al says: "Moral Support, Bronny!" And besides, he says, he's always been curious about what his head looks like.

But half way through, he observes that his Grandad shaved his head once too - and it never grew back.

It's true. Al's granddad was as bald as a badger. "Why didn't you tell me that!" I say. "I would have tried harder to stop you!"

But here's the thing. Once you start shaving your head, there is no going back. :))

Just look at Al shaving himself:

I see a remarkable resemblance to this picture of Spunky having HIS shave a few weeks ago. What do you think?

And so, here we are. Alan and I. On the night of our ritual shaving. It's a shame Harry has gone down the Coast or else we could have had a family pic:

What is there to say but: "Shall we dance?"

Friday, November 18, 2011

Hair 1

Yesterday it's two weeks after my first chemo and when I run my fingers through my hair, I watch with a kind of revolted curiosity as a large handful of follicles are dislodged.

For days I've felt a burning sensation at my roots, as if someone is pulling my hair. Actually, it hurts like Fuck, as we Australians like to say.

How much does Fuck hurt? I hear you ask. That is a good question but I do not believe it has been quantified in clinical studies yet. I just figure Fuck hurts a little more than Shit and considerably more than Fiddlesticks.

It's the day that my isolation period for low immunity reaches its climax, seven unremarkable days that comprise an eclectic mix of energy and industry, malaise and boredom.

There are five high points:

- I submit part of a long-term writing project to my client (ka ching!) ;
- I finish the last few requirements for my Certificate III in Fitness;
- Last Saturday, instead of walking the five kilometres I manage every day this week, I jog it - albeit at the pace of a one-legged 90-year-old man.
- I manage two outings, one when I have coffee with a friend (Emmily) and two, when Al and I go to Trivia with the gang (and win!).

For the first five days, my mum and aunty are here, cooking me curries and cooking everything they can lay their little Sri Lankan mitts on. They make me about 2,085 curry rolls. They create feasts of such magnificent proportions I have to remind them that it's just Ben and I!

By the time they leave, I am channelling my inner Oompah Loompah. Even the dog is looking bloated.

I diarise each day but it makes for soporific reading.

The one helpful thing I note is the way my sleeping patterns are disrupted, including two nights of terrible insomnia when I have to recourse to a sleeping pill. (What fabulous drugs. No after effects.)

I also note that isolation is about as fun as doing an exercise class in a high care nursing home - especially the bit where you have to work up a sweat moving your ankle in a circle.

Where once I would recoil at the notion of WASTING time watching bad mid-day TV, I can now report that 'The View' is truly a boring, boring show: all those opinionated women talking over the top of each other. Horrible.

Where once I thought twice about pharmaceutical intervention, now I think I might name my first grandsons, Pfizer and Glaxo (what do you think?)

My motto has gone from Carpe Diem to Pass-the-Remote. I suppose I should be grateful that it hasn't become Pass-the-Kidney-Stone.

Today, Maria - the Michaelangela of hairdressing - picks me up early in her neat little beamer and we drive to Carindale.

I have a voucher for $75 from the Cancer Council to spend on a wig. My girlfriend Chris says she hardly used hers, but I know I have a couple of social engagements coming up when I would prefer that I looked less Humpty Dumpty and more, I don't know, Hairy McLairy?

The importance of hair, of course is not to be underestimated. In most societies it is a totem of sexuality and more. Although, I think in Donald Trump's case it's probably just a totem of sad-old-man.

So I suppose it's understandable that my impending defoliation has required some adjustment.

When we get to Starkles, I try on a few wigs. You'll have to guess which one I chose:

I have a good collection of ratty party wigs too, so I'm torn... perhaps I could go for one of the looks below:

The Skank:

The Ho

The Fro
(Cue Minnie Riperton)

After selecting my wig and purchasing some other hair - um, scalp - adornments, Maria and I do some Christmas shopping and return home for - da da da sum - the last haircut.

We decide not to go for the Colonel Klink look and instead opt for, perhaps a Le Beau (all you Gen Ys out there - look up 'Hogan's Heroes').

Here is what I look like:

The roots continue to hurt afterwards but at least the follicles being dislodged aren't so offensive.

Soon, I realise the soap opera that is my life will make the transition from "The Young and the Breastless" to "The Bald and the Beautiful".

Soon, I shall have to add a position on the billiard table to my personal Karma Sutra, preferably with my head positioned neatly over a corner pocket.

So what can I do other than celebrate the hair and now ... and hone up on my bad-hair puns.

To be continued...

Thursday, November 10, 2011

Drama 1

And so, as the first week after chemo ends, I wake before dawn.

Today Al is leaving for a golfing sojourn in New Zealand with some of his good mates.

I have encouraged him to go. The poor man has been waiting on me hand and foot for weeks. He's been treating me as if I'm a fragile flower, bless him.

He leaves well before 5.30 am, and even though my hips are aching, I roll over and drift off to sleep.

What's unusual about this is that for the first time in days, I dream. I dream of a man who is disappearing and people around him have to work something out, before he is competely erased. In my dream, I dream it's a great story. I dream that I have woken up and have written it down, impressed by my pure genius!

And then I actually awake. And here's the thing. I wake CRYING! In fact, I am sobbing uncontrollably.

The last time I cried quite so vehemently was when Michael Jackson died (which, in case you have been hiding under a rock recently, was June 25, 2009).

It's altogether unlike me.

The deluge lasts, I don't know, perhaps five minutes? I feel bereft, alone. I have become the wreckage of an abandoned ship.

I've become the fish, chucked overboard in disgust, by John West.

And then I realise, of course, how much I've been relying on Al. Without him to hold my hand and stroke my forehead, I couldn't have come this far.

He is the rock I've been clinging to while all around, I have been praised for my 'courage'.

Once this fit of unusual self-pity has passed, I suddenly realise that something strange has happened to my face.

I roll out of bed and go and look in the mirror. I see that my lips and my face are swollen.

I panic. Shit! Is this an anaphylactic attack?

I scurry to the medical cabinet and throw down an antihistamine.

I start panicking. I'm alone. Help! What if I can't breathe? I try Ethel. No answer. I look at the clock. 5.58 am! Shit. Too early. I ring my dad. It rings out.

More panic. I grab my patient diary and call the Emergency Number at Greenslopes Hospital. Is it enough? A bloody Zyrtec. That's all I have.

The nurse at the Hospital is quiet and calm. I've done the right thing. Wait 20 minutes. If I'm breathless she says. Ring 000.

Dad rings me back. Mum is one her way, as arranged with Al. Hooray!

Now I've calmed down. Okay, no breathing problems. Everything's fine.

My mum arrives and we take this picture, so that we can blow it up and send it into the next 'Face of Australia' competition. Good thing I'm not vain, because here it is:

It's actually quite funny. I look like I've gone 10 rounds with Tony Mundine.

No, I look like the love child of Mal Meninga and Jocelyn Wildenstein. (Sarah O'Hare eat your heart out you hideous mole) :)

Mum cooks me breakfast and lunch. My aunty comes in for a chat. We have a laugh.

My neighbour, friend and fellow world-changer, Craig comes over bearing a coffee and red frogs. He's so lovely.

Later, I have a visit to see Dr Choo. It's early afternoon and I'm still swollen. In fact, I look like a bad Botox experiment. Quite youthful if a bit Chinese around the eyes.

Dr Choo is at a loss to explain my allergy.

We discuss various theories. The wind last night? Something on my dog? I am none the wiser. Perhaps we'll blame the herbal supplement I took last night (Astralagus - apparently good for recuperation from Chemo) - except for throwing up last night.

She tells me that in the case of a severe allergy attack it's best to use Phenergan.

After we get home, Louisa comes to take me for our walk. It's EVEN slower. I tell her about my experience today and laugh, thinking how Al would have taken it if he'd got the call on the 13th hole.

"You bastard. You left her for four days and now she's dead!"

But the evening is good. Mum and Aunty are cooking me a prawn curry for dinner.

Outside it's a fresh evening. I hear the wind keening in the trees.

What started badly, has ended, I'd have to say, pretty well.

I find I can laugh in retrospect.

That's what I'm counting on.

Demon Days 1

Seven days have elapsed since my first chemotherapy session and I have nicknamed them the 'Demon Days', the hours when the effects of my treatment begin to hit. There is little that is poetic in this and I relive them here so you will understand the dynamics of this 'battle'.

Day 2: My only symptoms are nausea. I have arranged to go to a movie with Lee, who's a registered nurse and my much-loved travel buddy. Lee works at the Mater Private as a discharge manager and has nursing in her blood. She loves it! Lee and I have a shared background in aged care. Last year we spent 4 whole weeks travelling the Trans Siberian and didn't once tire of each other's company. That's got to say something!

Before Lee arrives I go for a 5 km walk. So far so good.

She picks me up and we go to meet Louisa at the Cinema - I want to see "I Don't Know How She Does It". It's a lightweight, cheesy flick and just what I need. Then we have lunch as my friend Mel's new cafe, "Harvest". Lots of my mates are there and I feel like I'm amid family.

Then Lee drives me home and administers the injection. This is 'Neulastan', an injection I must have after each chemo session to create more white blood cells. It's this medication that will lead to severe bone pains.

I'd like to tell you it was a pleasant experience, but I have a needle-phobia thing happening. I tell Lee to lie to me and say: "This won't hurt a bit". She accommodates me, but of course, it stings like hell.

After Lee leaves, I take another anti-nausea tablet and have a nap (side effect: drowsiness). I rouse myself so Harry can drive me to the chiropractor for the adjustment I badly need to combat dizziness. (I had a fall last week).

We have a good chat in the car, the kind we used to have all those years I drove him back and forth from school. He's a really great kid. I manage to tell him that I really hope he never takes up drinking. (Who can resist an opportunity for a lecture?) He says there's a lot of pressure on him to drink but announces "My role model is the Purple Wiggle"... who never drank but apparently, loved his 'mashed potato, mashed potato'. Not to mention his fruit salad. :))

I have an early dinner and am asleep again by 7 am this Friday night. I try not to think about my friends kicking up their heels at 'Elysium'. I try not to think about the life I am not to lead in the months to ensue.

I try not to think about the fact that I was once inside the lolly shop, and now, I'm outside, with my nose pressed up against the glass.

I have been transported to an alternative universe where my sole concern is not to throw up.

Day 3: Today is Ethel's birthday but my darling mother in law still pops in to do the little bits of housekeeping she's been doing in the mornings for me. These days I know she's around thanks to the smell of Dettol, the whirr of a vacuum cleaner and the clink of a mop bucket. Somehow it seems wrong. Ethel is 74 today! She finds me curled up in bed as the nausea is really bad today.

Louisa rings and offers to chat to me and walk Spunky. As it turns out, she convinces me to join her for a stroll. We walk for 3.5 kms. Awesome!

Greg rings, hungover, to see how I am. He tells me to channel my schadenfreude any time I feel like heaving and think how much worse he is feeling.

Al is cooking a special lunch for his Mum at her home for her birthday. I can go if I feel like it and choose to do so.

It's a picnic style lunch and I even manage a small sip of wine.

That evening, I have the option of going next door to the Hargraves for a Pizza Party. The Baddileys, the Wheelers and the girls are there so I decide to make the effort. My motto so far is to try and live as normally as possible.

It is this night that I realise bed time will be most challenging. Nausea swells and I have to take a tablet to go to sleep.

Day 4: Today I wake with a soreness in my hips. There's a pain that keeps sliding to different parts of my body. I feel antique.

Louisa comes round to take me for a stroll but I can barely manage 2 Kms if that. Still, it's good to be upright.

That afternoon, I have the choice of going to her place for a simple barbecue. There I meet Peter, who has been battling liver cancer for the past 8 years. There is a sombreness to our discussions, but Peter and his wife Heather, are nonetheless charming.

When we get home I go straight to bed. I feel very tired.

Just before evening, I ring my Dad who tells me some bad news. His friend, Greg has died of throat cancer. Greg was at my house in late August for my parents' 50th Anniversary. And now, a few weeks later, he's dead at Age 66.

I am reminded again that cancer kills. It's as simple as that.

Later my Mum rings. I'll tell you what makes it difficult. Despite my best efforts to sound cheery and tell her I'm just tired, she bursts into tears. This is not good.

All of a sudden I'm aware that maybe talking about illness is not such a great thing. I appreciate why some want to live these things out in private. Does it really help, I wonder, taking this stink to others and sharing it? Have I been selfish?

Day 5: By now I am into the rhythm of medications. Panadeine Forte and Anti Nauseas have helped me get through another night. Today, I am working in bed. I'm glad of having something to keep my mind active as weird parts of me occasionally jolt with pain - fingers, jaw bone, hip joints.

Marie drops by bearing a special home-cooked meal and a Care Bear, sent by her beautiful daughter, Kate along with a card. What a kind family they are. It's a long time since anyone gave me a bear!

I manage to do a little work. Despite the aches, I feel okay.

My Mum and Aunty drop by bearing food. We have a good chat. Mum has brought me two prayers, one a novena to St Jude, which she insists I must recite. The other prayer is a Prayer to Obtain Favours which must be said 15 times a day from the 30th of November until Christmas Day.

There seems to be a bit of red tape around this business of praying. I never knew! I mean, what happens if you only say the prayer 14 times a day? Is it like the contraceptive pill? If you miss one, you're screwed? (Mum, I'm joking!)

In the late afternoon, Al and I go for a 3 km stroll. There is a lovely sea breeze, the sky is clear, I would not be dead for quids.

Tonight the pains are pretty bad. I take a painkiller and breathe myself to sleep.

Day 6. More pain so I spend the day in bed. I am supposed to go to an appointment with the radiation oncologist but Al plays golf today and it is all too hard.

Al has been waiting on me hand and foot and I don't want my crappy life to become his. I am encouraging him to keep living his life if he can.

He makes me a sandwich for my lunch and gives Harry instructions to wait on me. Yeh, like that happens.

My eyes are sore and I have difficulty reading or concentrating. My scalp has started to hurt. I doze and before I know it, it's the afternoon.

I am still nauseous and the pain around my head is kind of interesting. It feels like I have my face caught in a door.

Louise rings from work and we have a good conversation - probably the best one we've had in years. I feel strangely happy.

I use my iPhone to cruise a favourite online dress shop and, without a second thought, buy a nice navy dress. It's one way to go shopping I guess - from a horizontal position :)

Ben gets home from school and brings in a parcel. It's from 'Timbo's mum', Claire. She has written a lovely card and sent me 2 old books from a favoured collection. I haven't spoken to Mrs Wilson in years. I am genuinely touched.

And again I feel it, the way this illness wields a dark magic of its own, rekindling relationships, maybe even building bridges.

Louisa comes to take me for a stroll. Once I get out in the fresh air, I feel okay. We walk down to a nearby park, stopping to admire the feel of the wind in our faces as we look out over the bay at low tide.

On our way back, I want to walk a bit further and Louisa says: "Wow!"

"I"m only in pain, Louisa," I observe. "I'm not crippled!" And so 3 km is completed.

I don't know if I can keep this up as the months progress, but I can try.

Harry arrives home with some food he has picked up from Maddy's. I feel pretty awful as I'm hungry.

Going to sleep I feel a bit ordinary. I am aware of funny pricks of pain, as if someone is poking a sharp pin into parts of me, but manage to have a reasonable night's sleep.

Day 7: I wake up with a funny taste, in my mouth but the pains are not so noticeable. I think I'm nauseous but don't know if I'm just hungry. The thing with dealing with this illness is that I have lost my way where my body is concerned. When I'm hot, I don't know if I have a fever without a thermometer. When I get aches, I don't know if it's because I've slept the wrong way. I don't know what is 'normal' anymore.

All day, I think I feel okay but then realise my jawbone is aching, or my hips.

Today I need another blood test. Al drives me to the pathology lab where I am seen to by a lovely lady called 'Elisabeth'. She lets me lie down but even though it feels like it didn't hurt, maybe it did?

I am starting to become disconnected from my body. I don't know if I'm feeling too much, or feeling too little.

When I get home, I go back to bed. I watch a lightweight, insignificant and badly acted movie on Foxtel. I still can't seem to concentrate long enough to read a book even though it's a good one.

In the afternoon, Louisa rings to say she is too tired for a walk. I say: "Too bad. I'm sick. You're tired. We make a set so no excuses."

We walk for 4 km at a brisk pace. Maybe I overdo it because later, after I get home, I take off my shoes and start scratching my feet like mad as my toes swell up. That's never happened before.

The evening is not good. I have dinner but feel really ill. I end up throwing up - twice :(

What started off as a good day has ended badly. As it is, I have a tiny little drama in the morning.

To be continued...

Saturday, November 5, 2011

Chemo 1

Forty one days after initial diagnosis I attend my first chemotherapy session at the Greenslopes Hospital. Alan and I leave nice and early and make the trip in good time to arrive at 8.30 am.

Unfortunately we are early as my appointment was apparently for 11 am. Waiting at the front desk is a beautiful bunch of flowers from my friend Chris, who has become my interstate mentor. This is the third pressie from her. Aside from the prosthesis, Chris also has sent me this box full of individually wrapped gifts pertinent to various stages of the long haul to cure:

Despite the mix up with my appointment time, there are no dramas and within a few minutes, Al and I are herded into Suite 6 where I will receive the marvellous infusions that will guarantee total cell death in 7 days. Sounds intoxicating don't you think? Here is Al in an empty Suite 6. That recliner chair goes up and backwards and in front on the wall is a television set. It feels a bit like the Qantas Gold Club :)

This is the Cyril Gilbert Suite at Greenslopes Hospital and around me, patients, most of them much older than me, are receiving different treatments. All of them have their hair in situ and when I question one of the nurses about it later, she explains that there are more than 100 different chemo drugs - not all will lead to hair loss.

The ward is a flurry of activity - noisy! Al comments on the high nurse to patient ratio and indeed, through the day, three nurses will attend to me in some form, Hee (no, her surname isn't Haw), Bronwyn (good name that!) and most importantly, Peta, who administers my drugs. She strikes me as a calm and capable nurse, and that is comforting.

The first step is the insertion of the cannula which presents some dramas. It's imperative this is done properly as any leakages could have drastic consequences. There are two attempts, the first incredibly painful as the target vein collapses, the second more successful.

Before we commence, I am given an anti-nausea tablet. Then Peta arrives with the toxic load. Here is a picture of her. There isn't a cancer patient alive who would not see the irony in this image:

The first drug I receive is Adromycin ("the Red Death") and already, I'm annoyed that I have researched these babies quite so thoroughly. Peta tells me to alert her immediately to any signs of burning, swelling, pain and so as that may indicate a leak into the tissue. So of course, guess what? I start imagining those very leaks and Peta keeps having to check.

This drug is inserted into the cannula with a syringe and it's creepy because it's cold and I can feel it running up my veins.

That successfully achieved, it's time for my tea break and a friendly lady gives me and Al a nice cup of coffee and a piece of cake.

Before the next drug is administered, my friend Tracey arrives to tag team with Al who needs to do a bit of work at the 'man pad' we're creating for Harry in town.

I can't begin to tell you what a difference it makes having Tracey to talk to. The next drug is Taxotere. Large icy neoprene gloves, shaped like oven gloves, are placed on my hands to stop one of the known side effects: the darkening of nails. It's cold! Peta says she'll wait with me for 15 minutes. I'm to look out for breathlessness, respiratory failure and all those pleasant things which go with a major anaphylactic attack. As I chat to Tracey, I'm not even aware of what's happening as this drug is applied via a drip and over an hour.

Peta leaves us, pointing to the nurse call button in case of emergency and wryly joking: "Or you can just jump out of the chair waving your arms and yelling 'Help' - that works too." I can't believe I'm smiling.

The Cylophosphomide is last and, as I am not told to look out for any nasty repercussions that goes okay.

We have been at the hospital for five hours. I am given an injection of Neulastan, to be given 24 hours after discharge by a trained nurse, and a packet full of anti nausea tablets.

After bidding farewells to Tracey, I have to go up and visit my oncologist. Here is a picture of her - cute isn't she?

Dr Choo gives me some scripts for painkillers, sleeping tablets and reflux. You think I care at this stage? I have A-grade toxins in my veins - any interest I may have had in internal purity has gone to the dogs. She also tells me I need to see her again in a week, with another blood test in-between to check my counts.

What strikes me is the irony of things as Dr Choo is one clean-living icon. Sleeping pills? Never taken one. Reflux? What's that?

And so Al and I leave. On the way home he comments on how well I seem to be travelling. We pick up a delicious meal for dinner prepared by Nim's friend Jo. We arrive home and I tell Al I feel like a walk. I tell him I've made a pact with myself to try and walk every day of my treatment. Something to make me feel I have some control over my body, that I'm doing something that is drug-free and good for the soul.

We walk for 5 kms, Al commenting on my unusually slow pace. It's pleasant. We have a good conversation and when we get home, there's a lovely dinner already cooked! Bargain.

The first night passes with me in a hot sweat and some late night/early morning nausea. I have to get used to the late night forage for tablets I think.

What can I do but rally on?

Even writing about this experience has been challenging. I don't know how I'll go diarising the lot of it, but for now, I hope all you healthy women out there have another motivation for checking your breasts regularly. In fact do it now!

Because, already, I know I would not wish this journey on my worst enemy. Take care of yourselves everyone!

Wednesday, November 2, 2011

The Night Before Chemo

It's the night before my first Chemo and my mum and Aunty come over to cook me and a few friends (Greg, Lyndal, Garry, Ethel!) a special meal of 'hoppers'. This is a Sri Lankan delicacy and quite difficult to make. There is a prawn curry and a selection of sambols finished with a Sri Lankan dessert, Vatalluppum. It makes it a special night because my Dad comes along too!

Here is a picture of my guests digging in!

As you would expect, my mum (and dad) have been very worried about me since my diagnosis. I have already had the little speech about how parents want their children to outlive them.

My mum, usually too busy with endless meetings and social engagements seems to have put some of her own life on hold. She's telephoned and visited with more regularity than I can remember in a long time.

It doesn't help that, at 73, Mum has the constitution of an ox and takes no potions or pills. (Her dad popped off at 92).

Today I had to have a blood test which is a prerequisite for each chemo session. It's just a bummer that I hate needles. Strangely, I am happy to watch a heart and lung cut out but I can't bear to see a needle inserted into skin - this despite my Dad being a career Type 1 diabetic.

It's a bit depressing that I will soon be on first-name terms with the lady at the pathology lab :(

A good thing though is that my aunty Marie called today from Melbourne for a chat. I like my aunty. She emanates a certain calm and patience. So of course, I find it hilarious when she tells me my Uncle will sometimes drive her to use the 'F' word in its adjectival form. Who knew?

Yesterday my cousin, Dilhara, rang from Sri Lanka. It was really nice to hear her voice and yet again I contemplate that strange thing about cancer: of bringing people to me - and not all wielding scalpels and injections!

In the lead up tomorrow, meanwhile, I've become an armchair expert in what I've learned is an age old treatment for cancer.

My passion for science means I am keen to learn as much as I can about the protocols I have to endure.

Besides, you're talking to a person who has, up until now, thought twice about pharmaceutical intervention, the antihistamines for my seasonal allergies notwithstanding.

It's basically hugely ironic that, right now, I'm depending on drugs - the big guns - and I can only be thankful to the generations of scientists who have given me access to the idea that breast cancer is not a death sentence, that there is a very high chance of cure.

It's just unfortunate that the cure will deliver the kind of side effects that will mean I'm less Miranda Kerr and more Mahatma Gandhi at the end of it :(

As I have already mentioned, I am to have the T.A.C treatment comprising the drugs docetaxyl, doxorubicin and cyclophosphamide, comprising six cycles at three week intervals.

This is just one regime of a multitude that is part of this fascinating area of medicine, involving many different drugs, 30% of which, I learn, are derived from 'natural sources'.

For example, Taxotere or Docetaxyl is derived from the bark of the Pacific Yew Tree.

Doxorubicin, an anthracycline antibiotic, was originally derived from a bacterium isolated from a soil sample collected from an area surrounding the 13th century Castle, the Castel del Monte (in Andria, Italy). Interestingly, the prototype resulted in some 2000 analogs - other antibiotics used across the spectrum of medicine! I find that amazing.

I have no bloody idea why the Castle figures in this history but I'm fascinated by the pathways of human inquiry. However, I still do not like the the fact that the nickname for Adramycine is "the Red Death" (I can expect red pee for a day or too. Jolly times.)

Cyclophosphamide meanwhile is described as 'the old war horse' of chemo, patented in 1952. It was accidentally discovered as a derivative of the nitrogen mustard gas stockpiled in WWII.

I could fool myself I suppose, that these drugs are made from natural sources.

In fact, did you know that medicines derived from terrestrial plants and microorganisms, marine organisms and terrestrial critters are used to treat 87% of all categorised human diseases?

Cone snails (their venom to be exact), sea hares, molluscs, the Carribean sponge, the dog shark, a plethora of bacteriums, fungi, trees and other biological sources area among the thousands of species of living matter that have contributed a part of their DNA to the modern pharmacy.

But despite their origins in nature, chemo drugs are cytotoxic and some, for example Docetaxyl (or Adriamycin), are in themselves carcinogens (that is, in some doses can lead to other cancers). Oh joy.

For further proof of the incredible toxity of these drugs, I consult the 'Patient Diary' I've been given that provides specific instructions for dealing with the by-products of chemo - those secretions that are inevitable from one's nether orifices at some stage.

(I'm sorry I have to mention them but I'm hoping charming modern movies such as "Austin Powers", "The Hangover" and "Bridesmaids" has primed all of you for the concept of spew, wee and poo. This is a blog about illness, after all and sadly, tea and tulips do not figure in this narrative.)

These are, apparently, particularly toxic and must not come into contact with human skin for the first 7 days after each treatment: toilets must be fully flushed lid down; the area must be cleaned with household detergents and disposable sponges; disposable gloves are to be worn when handling bed pans and urinals (yuk!); gloves, wipes or anything else that comes into contact with the various excretions must be sealed inside two plastic bags and immediately placed in the wheelie bin; any bedding that is soiled must be washed separately from other linen in the washing machine in hot water for one full cycle.

So you see, I'm going to be positively radioactive!

Another important thing about chemotherapy is understanding its three-stages: Onset (7 days); Nadir (10-14 days) and Recovery (21-28 days). I especially like the word "Nadir". It sounds like an exotic location don't you think. "I'm sorry. Bronwyn is uncontactable right now - she is in Nadir."

What this means is that basically in every 28 days, I'll have 7 days of feeling crap, a period when my immunity will be at such a low point that even my dog will have to be sent away; and then recovery when hopefully, I'll be able to kick up my heels and whistle dixie.

That's the theory anyway.

Meanwhile, my friend Tim asks a good question: why, if I am node negative and the cancer has been cut from my breast do I need all of this, chemo, maybe radiation, ongoing drug therapy?

I find an article a 2001 Journal article that explains: "Despite apparent curative surgery in the treatment of breast cancer, 21% of node negative patients still develop lump node and distant metatastatic disease at 18 years. It is likely that this group has occult micrometastatic disease at the time of initial surgery and that they are unidentified. Recent studies have established that current routine histological assessment of regional lymph nodes underestimates breast cancer metastasis."

I guess what this really means is that cancer progresses at a microscopic level, through lymph nodes and tiny blood vessels. Locating it is as difficult as finding, say, a single quotable quote in any season of 'The Kardashians.'

I supposed that chemo is the only way to ensure these rogue little bastards can be destroyed.

So now, after my feast of hoppers, as I prepare for bed tonight and hope for a good sleep, I have to admit that, dire as the side effects are, I NEED chemo and I hope like hell it all goes well tomorrow.

For now, what can I do other than be impressed and amazed at the scientists who worked out that toxin can be therapy, that poison can be cure?

There's a certain genius behind it all.

I'm relying on that.