Tag Archives: chemotherapy

Oh Christmas Boot!

Oh Christmas Boot!
Oh Christmas Boot!
Your tinsel shines so brightly!

After breaking my foot the other night, there weren’t going to be any fancy high heels for me this Christmas. Oh no! As my witty daughter pointed out, I was off to the “Bootique” instead.

This boot might be kind of grey, clompy and unattractive but I’ve never been so happy to see a boot before in my life. It was almost an instant fix… a miracle cure. I still took painkillers for a couple of days but wearing the blessed boot made a huge difference. I can walk around and I’m not going to have a near-death experience tripping over myself on a tangle of crutches. As you could imagine, if I could break my ankle on a relatively flat stretch of grass,I would have killed myself on crutches!!

Being 8 years old, our daughter wanted to sign my boot. Even though I didn’t have a cast, that’s what you do when you’re an 8 year old kid whenever one of your friends breaks anything. You have the fun of signing the cast while the other kid endures all the pain.

MIss decorating my foot with love.

MIss decorating my foot with love.

So instead of signing my cast, my daughter and I set about turning the boring grey, boot into a Christmas tree. She wrapped it in red tinsel and added decorations. While we were snapping away taking photos, I even threw a Santa hat over my foot. Yes, we were really getting into the Christmas cheer. Just had to wait til the kids went to bed so Geoff and I could get stuck into our box of Lindt dessert chocolates which were conveniently on sale before Christmas. Last night, there was also a glass of chilled Moscato! Now, we’re really living it up!!

Carpe Diem: Seize the Day!! It's are rare occasion that I'm able to wear heeled shoes but I wore these fabulous beauties to my cousin's engagement party at Circular Quay.

Carpe Diem: Seize the Day!! It’s are rare occasion that I’m able to wear heeled shoes but I wore these fabulous beauties to my cousin’s engagement party at Circular Quay.

What I particularly liked about our creative and Christmassy makeover of the boot, was that we were taking something bad and perhaps not turning it into a positive but certainly turning things around. Turning sadness and pain into a smile, a laugh..even if it’s only for an instant. As you have no doubt found yourself, laughing at adversity and bad luck is strangely healing…even when we hurt! It might be a cliche, but whatever doesn’t kill us, does make us stronger and I’ve been through much worse than the broken foot! This means that if and when we break a foot, we can still get up on stage and perform. We can push through the pain to see our children stand up on stage and sing, dance, play their guitar, before we collapse in a screaming heap. I’ve been home all week and the kids have now been dispatched to their grandparents but we are okay. We’ve acknowledged the bad stuff and worked through it. Laughed and poked fun at misfortune and we’ve kept going.

The kids were so loving and sweet. Mister brought me over a foot rest but Miss decided to be the foot rest herself.

The kids were so loving and sweet. Mister brought me over a foot rest but Miss decided to be the foot rest herself.

It just would have been nice to have had a hassle-free Christmas this year after going through chemo last Christmas and spending Boxing Day in hospital. After all, as much as you can put a positive spin on a chemo Christmas, it’s still what it is. As much as that chemo saved my life and brought us hope at a very dark hour, there are still many, many other places I could have been. Yet, that’s okay. I am always thankful. The chemo didn’t hit me as hard as I’d thought and instead of being in a cast this Christmas, I have a removable boot and I can get my feet wet. This is a very significant point when you’re spending summer at the beach.

In other words, I can acknowledge my gripes without becoming another Grumpy Cat.

Whatever happens in life, we have to keep moving and keep turning our bad luck into our funny stories, jokes and anecdotes. That, along with my faith and knowing that God is with me no matter what…these are the things which sustain me along the road and give me hope.

By the way, I must admit that I’ve felt mixed emotions eating Lindt chocolates after the siege. I live near Sydney and Martin Place is at the heart of our city…particularly now as it overflows with floral tributes, tears and love for the hero hostages who lost their lives in the siege. Is it okay to enjoy a beautiful Lindt chocolate when those precious people lost their lives in the Lindt Cafe? Shouldn’t I be more noble, self-controlled and simply go without?

I have given this a bit of thought and decided that it is okay to both eat Lindt and give Lindt this Christmas. It’s not that I believe in just getting on with it but I think it’s okay. You can’t blame a chocolate for such evil…only for the usual temptations of over-indulgence. Perhaps, this is being presumptuous, but I don’t think the hostages would want us to stop buying Lindt on their account. They were all lovers of Lindt which is why they were in that cafe in the first place. I also have to admit that I have terrible willpower and what with my broken foot and dreadful cough, there’s no better remedy than chocolate…especially Lindt!!

After breaking my foot, I’m particularly hoping a chocolate a day will keep the doctors at bay…especially before Christmas!!

xx Rowena

PS: It is a strange irony that I managed to ski at Perisher for 5 days without falling over and yet broke my foot simply walking along the grass at school.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

Crime in the Quiet Carriage.

Breathe! Keep breathing! Remain calm!

But I can’t. I’m wound up. Seriously agitated and my brain is rapidly heating up, about to reach boiling point. No amount of relaxation, mindfulness or psycho-babbling positive self-talk is working. A rapidly ticking bomb, I’m about to go off. No small explosion either. This is definitely way beyond a small or even a medium-sized bang and rapidly accelerating passed a big one too. We’re talking a nuclear explosion… right here right now at this very precise tick of the clock.

Stop talking! This is a quiet carriage!!!

Stop talking! This is a quiet carriage!!!

There must be worse crimes against humanity than talking in the quiet carriage but right now, nothing comes to mind.

Before you start thinking I’m the psychopath, just let me just tell you that I’m on my way down to Royal North Shore Hospital to have a long awaited MRI of my brain. My neurologist hasn’t ordered this test for fun or as some kind of high-tech photo shoot. No, you seriously don’t have an MRI of your brain for fun and there’s definitely not going to be any smiling for the camera either. As if being covered in a white sheet and shut inside a white plastic tunnel being bombarded with weird electronic noises isn’t bad enough, they’re jabbing me somewhere with a needle.

Having a brain MRI. Covered in a white, sheet you disappear inside a white tunnel. Get bombarded by all sorts of jalting, beeping electronic noises. jabbed and then you're free to go home...you hope!

Having a brain MRI. Covered in a white, sheet you disappear inside a white tunnel. Get bombarded by all sorts of jalting, beeping electronic noises. jabbed and then you’re free to go home…you hope!

They’ve jabbed me with THAT needle before. They jabbed me right in the head, injecting radioactive isotopes straight into my shunt. I tell you, I’m a veteran of jabs and I’ve survived brain surgery and chemo but that jab in the head has no equal. It involved absolute and utterly excruciating pain. I can assure you, there’s some now graduated medical student out there who still bears the scars of near crucifixion in their hands. I dug holes in his soft, polished flesh with my unkept but piercing fingernails.

So here I am getting on the train thinking about the pain, the possible outcomes and how I’m even going to make it to the hospital as I’ve spent the best part of the last month in bed and traveling for almost 2 hours is a huge undertaking in itself. I don’t know what’s going on with me. Either I’m dying, or I’ve finally succumbed to the dark side of the force. I addressed this in a previous post: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

Maybe after this monster test is over, the sun will come out again and this will all seem like a distance dream. A black cloud mysteriously scudding across an azure sky which suddenly disappears like magic…a miracle! I’ll go back to my life of champagne and…My goodness! Who am I kidding? We all know real life is no commercial break!

Being such a long train trip, I’m expecting to makes serious inroads on Booker Prize Winner  Richard Flannegan’s Death of A River Guide. Given the intensity and chaos of the MRI plus trying to juggle the kids and all their activities, this train trip is bordering on a sacred journey. I so desperately need peace and quiet and a lot of thought went into choosing the right book for the trip as well. I’ve been flicking through a couple of books over the last couple of days trying to work out where to head next. I’ve read two other Richard Flannegan’s lately and decided he was a pretty safe bet and I was seriously looking forward to both losing and finding myself in a good book. A want which had transcended into something of a desperate need. A cry of the soul.

However, instead of finding myself inside the much anticipated and heavily sign posted quiet carriage, this place is  more like a crowded pub during Happy Hour or even a flipping circus with clowns…wild clowns. There is raucous chatter everywhere..even laughter. How dare they?!! Harlots!

Welcome to the Quiet Carriage!!

Welcome to the Quiet Carriage!!

Alright, so I exaggerate a little. While there was some loud chatter down the other end of the carriage, there was one particular loud mouthed foreignor talking four times as loud as your average Joe talking with his friends…a group of seniors in case you’re about to blame the insensitive youth of today. Unfortunately, I was sitting right behind them. I soon started thinking about asking them to be quiet and pointing out the quite carriage signs which were clearly signposted throughout the carriage. I also thought about talking to the guard.

However, a few of my friends have mentioned the maniacs in the quiet carriages. The so-called “Noise-Nazis” who have a nervous breakdown over the sound of even the slightest pinhead of a pin being dropped. I like to be classified as the “nice woman” and not one of THEM…even by these totally rude, self-centred strangers I’m never, ever going to see again. Instead of being the bad guy, I chose the stoic high road…to suffer in silence. Of course, I could’ve alerted the guard if I’d been more nimble on my feet. They have a special announcement recorded for the socially inept. It goes something along the lines of: “This is a quiet carriage…If you want to talk, move to another carriage.”

I did consider moving to another seat or even try the standard carriage but it was all too hard. There wasn’t another seat and I’m not that steady on my feet. I couldn’t risk trying to change carriages while the train was in motion, even with my walking stick in hand. So instead, I sat as still and as silent as a marble statue…fuming. Fuming some more. I could feel the flames burning in my head. Smoke bellowing out my ears. I was mad. Irate. Furious. This was pure, unadulterated train rage.

Grannies show an umbrella can also come in handy!

Grannies show an umbrella can also come in handy!

In retrospect, I should’ve just taken a leaf out of my grandmother’s book. She would have bopped the lot of them on the head with her walking stick and told them in no uncertain terms that they were in the quiet carriage. “Are you blind? Can’t you read the signs?!!” My grandmother was pretty handy with her stick. What’s more, if she’d bopped them, she would have gotten away it.  After all, she was just a sweet, little old lady. There would have been no court appearances and not even the shout of “guard”! They would have taken their punishment and zipped it. Shown a bit of respect.

Me, on the other hand? One strike of my walking stick and I knew I’d be dragged off the train by armed guards and loaded into a paddywagon bound for greener pastures.

However, in the end someone else stepped in and played bad cop. Yet, this lot of seniors proved themselves a real bunch of reprobates.  They might have zipped it for about 2 seconds, which for this lot even felt like a very pregnant pause, and then continued bellowing through their inbuilt megaphones. You wouldn’t believe it. One of their phones even started to ring and of course another loud voice starts booming throughout the entire carriage. It wasn’t just a case of hello and goodbye either…more of a conversation and as far as I was concerned, quite the life story.

As I said, I know there have been worse crimes against humanity than talking in the quiet carriage but at this point in time nothing came to mind.

After reading and re-reading the same line of my book a hundred times over, I gave up on my book and surrendered to the noise.

Finally, we all alighted at Hornsby Station.

However, as the saying goes, it could always be worse. Aside from country trains passing through, there are no quiet carriages on Sydney trains. You just had to put up and shut up and if you don’t have the luxury of a seat, you also enjoy the thrill of having your nose jammed in a stranger’s armpit as well.

Anyway, after changing trains at Hornsby, I’m now heading down the North Shore Line on my home turf.

By now, I think we’d already established that lady luck wasn’t on my side. Of course, I had timed my train trip to perfection. Yes, it was home time for the hundreds and thousands of noisy, smelly, sweaty school kids who all piled onto my train as it stop started down the line. By this stage, all hope of reading my book was gone. Instead, I became the observer. I must say teenagers intrigue me. Potentially much more fun than the seniors yapping on about their super on the last trip.

I occasionally used to catch trains like this when I was at school…an all girls school. I must have been a bit older than this crowd because we were always conscious of the boys on the train and this lot seemed rather oblivious or perhaps it’s just that they didn’t have Hugh Jackman on their train. We did.

There were no looks, glances or giggles. Each group was its own island surrounded by their own impenetrable shark-infested sea. Ironically, the groups were arranged boys, girls, boys, girls throughout the carriage in their different uniforms. It all looked very strange to me and I felt like I’d landed in some weird, foreign universe. Why weren’t these teenagers all talking with each other? Did all these same kids catch the same train every afternoon sitting in the same “reserved” seats never giving each other more than a sideways glance?

The only thing standing in between them all was different uniforms and yet aren’t we all one human race? You wouldn’t think so. That said, we all know men are from Mars and women are from Venus…even my 8 year old daughter. She and her friends have been “at war” with the boys at school a fair bit lately.

If I could’ve had my way, I would’ve introduced all these kids to each other and tried to build some common ground. Not to play cupid or to nurture teenage romance helping some self-conscious souls find true love, but rather to begin a diologue and cross a divide that starts with different uniforms and extends to gender, skin tone, class, disability and results in war.

If only the problems of the world could all be solved on a simple train ride to Sydney, the world would be a much better place!!

PS As soon as we arrived at the hospital, we heard the dreadful, tragic news that Australian cricketer Phillip Hughes had passed away after a bouncer hit him in the neck, stopping blood flow to his brain. Being a brain surgery survivor myself and being in this really intense state prior to my brain MRI, the news hit me seriously hard. Hughes and his family and friends were no longer strangers but part of our neuro community and I loved them all with my entire heart..especially Sean Abbott who just happened to bowl the devastating ball. I send you love from the  very bottom of my heart!!

Chemo Brain…the Likely Culprit.

I just wanted to update you quickly after my appointment with my neurologist yesterday. While it’s quite cathartic to write humorous posts to deal with difficult situations, I felt I needed to stop being the clown and remove the mask.

The jury is still out on what’s causing my memory problems. It’s looking like chemo brain is the most likely explanation for my memory troubles and my neurologist has recommended eating lots of green leafy veggies, a multi-vitamin high in vitamin B but I also need to have a brain MRI and a neuro-psych assessment.

In case you haven’t had a neuro-psych assessment, it’s where a psychologist asks you a whole heap of questions like: what’s the name of the Prime Minister, count backwards by 7 and what’s the day of the week. Fortunately, they don’t ask you where you left your car keys or what you did with that school note last week. That said, some times even the day of the week could be problematic. Unless you’re Einstein, I’d say most of us don’t like the idea of someone tinkering around inside our heads.

Even if there is a medical justification for my memory troubles, I still don’t want to get the questions wrong. I have my pride and can still hear the humiliation of an entire classroom of kids laughing in my face. Growing up doesn’t erase the horrors of being picked  on at school and most of us have copped it at one time or another.

While I’ve done these tests before and can recall at least some of the questions, I’m trying to stop myself from rehearsing the answers:100, 93, 86, 79…

As much as I don’t want to make a mistake, it would be an even bigger mistake to cover-up my weaknesses. I’d ultimately only be cheating myself.

Meanwhile, I’m taking comfort that my writing is still going well and that I’m playing my violin and these are both mentally, if not physically, complex tasks. There’s still some sort of activity going on upstairs.

By the way, the brain MRI will check for the deadly brain virus with the long name I mentioned in my last post. Apparently, it’s statistically very unlikely: about 1 in 50,000. However, these days stats don’t appease my concerns. The chances of having dermatomyositis were much less at 100,000 to 1 and I struck the jackpot there. Once you have one statistically rare disease, the odds mean nothing.

The neurologist has also ordered some additional blood tests.

Meanwhile, while I’m waiting to get these tests underway, I’m self-medicating. Once you’ve been through chemo, a few bits of chocolate are absolutely harmless.

To read my post about cyberchondria click here: https://beyondtheflow.wordpress.com/2014/10/27/terminal-cyberchondria-yes-please/

xx Rowena

Terminal Cyberchondria…Yes! Please!

Being a blogger, a writer, reader and someone who likes to take responsibility for their own health, I’m a prime candidate for Terminal Cyberchondria. While not necessarily terminal in the sense of being life-threatening, you catch Cyberchondria from your computer terminal and more specifically by surfing the Internet for a diagnosis when you have more than a few “vague symptoms”.

Of course, having cyberchondria assumes that you are catastrophising again and your suspicions are wrong. That you have more chance of being killed in a car accident, or while riding a bike, than contracting that dreaded disease. No chance at all!! You don’t even need to cross your fingers, pray, say your Hail Mary’s. It’s all made up. In that great Australian tradition:”you’ll be right mate”!

However, once you’ve been struck by one or two rare, life-threatening diseases, that automatically opens the flood gates for you to develop any weird and wonderful disease… even the dreaded Ebola virus. After all, it only takes one infected person to board a train and it will spread faster than wildfire.

Well, I don’t have to worry about catching Ebola.

That has nothing to do with the fact that I live in Australia. Rather, you can pronounce and even spell Ebola and people have heard about it. That gives me automatic immunity. I specialize in the weird stuff…phenomenon even the doctors have to Google.

Anyway, since I had chemo at the start of the year, I’ve been having serious short-term memory issues and virtually no concept of time. For quite awhile, I’ve written these difficulties off as chemo brain, which is quite a common experience. In a way, this has been an interesting, quirky, experiment but I’ve now decided that it’s gone on long enough. I’m seeing my neurologist tomorrow.

There is quite a list of possibilities for my memory troubles:

  1. Chemo brain.
  2. Menopause.
  3. My shunt playing up. (I have hydrocephalus)
  4. Staying up too late.

However, I also started wondering whether these memory difficulties were side-effects of the new drugs I’ve been taking since I finished chemo. I’m on a drug called cellcept, which represses your immune system.

Google: a cyberchondriac's best friend.

Google: a cyberchondriac’s best friend.

When I Googled its side-effects, that’s when cyberchondria really kicked in. These side-effects include a virus that attacks your brain. In keeping with the unpronounceable dermatomyositis, this brain infection is called progressive multifocal leukoencephalopathy (PML). PML can be fatal. Symptoms include clumsiness, weakness that keeps getting worse, not being able to move or use one side of the body, and changes in vision, speech or personality (such as not caring about things that you usually care about and confusion).

After finding out the name of this dreaded disease, I’m wondering whether the people who name these weird and wonderful diseases and conditions, go fishing in their alphabet soup to put the names together. It has been hard enough to deal with “Dermatomyositis”, which is a serious mouthful but it only had 14 letters. The last word alone in PML has 19 letters. That must mean it’s very nasty indeed.

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I'm starting to wonder...

Going fishing in their alphabet soup. Is this how scientists name rare diseases? I’m starting to wonder…

When I discussed the complexity of these medical terms with Geoff, he pointed out that they are intended to be descriptions so a medical person can quickly identify what is likely to be a complex medical situation far better than simply calling it: “Fred the Super Really Bad Disease That’s Going to kill You”. I can see his point but that still doesn’t help me explain what I’ve got and get any kind of acknowledgement from anyone outside the medical fraternity.

Ironically, while I have these two exceptionally rare medical conditions, I still have my tonsils, appendex and adenoids…all those bits people commonly have out and that’s what concerns me about PML. It’s rare enough and hard enough to pronounce, that it’s just my kind of disease.

You see, despite the cyberchonriacs, there are those rare winners of life’s rare lotteries who actually have what they thought they had. Yes, they actually have contracted one of these exceptionally rare, systemic, really nasty diseases. You know the type of thing that used to show up on the hit medical series House. Instead of being free to continue their explorations in cyberspace, before they even know what’s hit them they’ve been admitted to hospital. Yes, the proverbial Mac truck of bad luck was heading their way and they’ve just taken a very direct hit.

That’s me.

Dermatomyositis is a rare, systemic auto-immune disease where your muscles and skin attack themselves. It affects about 1 in 100,000 people and I’ve only met one or two people with the disease. You can get painful skin rashes and your muscles breakdown resulting in muscle weakness and wastage. While there is no cure, there is treatment which is largely effective although my case has proved more difficult to manage than average. The way I see it, I’m fighting myself and being rather strong willed, it’s been quite a battle. Dermatomyositis can also affect your breathing, swallowing and digestion and there are also the side-effects of the drugs and treatments. I am really surprised that I don’t glow in the dark after all my treatments. I’ve even had the Big C. That’s right. They’ve even blasted it with chemo. Thank goodness it worked.

However, while the medical treatments can be annoying, the hardest thing about having dermatomyositis has to be trying to explain it to anybody. I don’t know if you recall the Decore shampoo   commercial a few years ago where they had the person singing in the shower going: “D…D…D…Decore…Decore”. Dermatomyositis should be classified as some kind of tongue twister. I gave up trying to explain it years ago and just said I had muscular dystrophy. I thought it was a form of MD but it’s officially a neuro-muscular disease. Consequently, I now say it’s related to Muscular Dystrophy. However, if our son is around, he smiles with a baffled expression and tells people point blank: “You don’t want to know.”

Anyway, when you have a very rare disease, it opens the floodgates for all sorts of other conditions. After all, no one can tell you that rare can’t happen to you. Your last name might not be Murphy but bad luck sure knows how to find you!! It has your landline, your mobile and even your email address.

There’s a famous quote from the movie Casablanca which makes me smile:

“Of all the gin joints, in all the towns, in all the world, she walks into mine…”

That might have happened with dermatomyositis but hopefully, progressive multifocal leukoencephalopathy has somewhere else to go. It will board that plane with Ilse and Victor Laslo and disappear way beyond the clouds. Poof!

Goodbye Progressive Multifocal Leukoencephalopathy  (PML). Have a nice life!!

Goodbye Progressive Multifocal Leukoencephalopathy (PML). Have a nice life!!

Wish me luck with the neurologist tomorrow.

I don’t mind being told that I’ve over-reacted. A bad case of Terminal Cyberchondria is exactly what this patient has ordered.

xx Rowena.

If you are looking for information about dermatomyositis, which is a form of myositis:

The Myositis Association of America: http://www.myositis.org/learn-about-myositis/types-of-myositis/dermatomyositis

The Myositis Association of Australia: http://myositis.org.au/

Dipping My Toe in the Snow.

Wow! After more than seven long hours of driving and spending our first night in Jindabyne, we arrived bright and early in Perisher, otherwise known as “the snow”.

As I looked around soaking it up, I felt like I’d landed in a huge tub of cheap, whiter-than-white, vanilla ice cream. You know the stuff that’s pure white and not one of the better, creamy vanilla ice creams. The snow was deliciously thick and the skiers out on the slopes looked like those miniature figures you stick on top of birthday cakes. All we were missing was the candles, a match and Happy Birthday!

The weather wasn’t the best on our first morning. It had rained a lot the day before and the mountain was shrouded in mist. You couldn’t even see mid-station, let alone the summit. Visibility is a good thing when you’re skiing. By midday, the mist had lifted clearing the way for azure blue skies, which we enjoyed for the rest of the week. It was serious beach weather and all that was missing was the water. However, despite the balmy sunshine, it was still only 6-8°C out there and definitely NOT bikini weather…even for our daughter!!

Sun shining through the Snow Gums, Perisher.

Sun shining through the Snow Gums, Perisher.

While our kids went straight to ski school and my husband headed out to the slopes as soon as he could get the rest of us organised, I’d booked an adaptive ski lesson at 11.30 and had a bit of a wait. I am a member of the Disabled Winter Sports’ Association and I receive lift tickets and ski instruction half-price. We also received some much appreciated financial assistance under the Flexi-Rest program.

My instructor helping me on the Magic Carpet last year. I didn't need that hand this year. Could get up the carpet myself.

My instructor helping me on the Magic Carpet last year. I didn’t need that hand this year. Could get up the carpet myself.

I was stoked to book a lesson in with Tom, my ski instructor from last year. Tom is a specially-trained, adaptive ski instructor. He’s mean on two skis but I’ve heard that he’s also a legend in a sit chair. While it’s an achievement to be able to ski at this level, it is such an inspiration to see someone use their physical strength and expertise for good and to help people who are experiencing a few extra challenges, achieve their dream of skiing. This not only takes exceptional skiing ability but also a detailed understanding of the subtleties of so many different disabilities, treating people with respect and knowing when and how to encourage while bearing real and potentially risky limitations in mind. I was going to say that this is a gift, a talent but it’s no doubt taken a lot of hard work, a good set of listening ears and a real passion and empathy for helping people with disabilities to reach their potential.

I can’t tell you what this has meant to me and our family. It really is a terrible thing when you can’t go on a family holiday and do things together. That one member of the family is shut out and excluded when with a bit of patient, qualified assistance, they could be taking part. While I always appreciate a bit of “me-time” and having a break, it’s quite something else to be shut out of family activities. Through Tom’s help, the bird was set free from her cage and truly able to soar!!

Last year, Tom actually skied backwards down the mountain for me. That’s right. Tom skied backwards down the mountain so I could ski forwards feeling safe yet encouraged. This was much the same way as you see a parent encourage their toddler to walk beyond their first few tentative steps. How many people can say that anyone’s done that for them? Not many, I’m sure!! But Tom did that for me. Being a ski instructor, skiing backwards down a mountain wasn’t a big deal for him but it made a huge difference to a completely freaked out, panic-stricken me. There I was gobsmacked, perched on the very edge of the world holding my breath as I looked down, down, down. Perisher Village had shrunk into nothing more than a handful of dots. It was such a long, long way down and I was held in the very grip of fear. Indeed, I was frozen to the spot until I fell over. As much as I wanted a skidoo to come to my rescue, Tom went backwards down the steepest part at the top of the mountain holding my hands to encourage me down. I’m surprised that he wasn’t needing to dangle chocolate in front of me to lure me down, I was that frightened. At the same time, I desperately wanted to pull off this challenge. It had been in the pipeline for an entire year and I wanted to ski down this blasted mountain and turn my personal mountain around. I wanted to ring that victory bell!!!!

So having reached the bottom of the mountain, you can understand why Tom is my hero and has earned my respect. Oh please! I’m not some shameless, gushing cougar. No, I’m a skier! Tom and I discuss life, philosophy, writing, books and of course skiing while we’re out on the slopes. You do get to have a bit of a chat while you’re on the magic carpet. It takes awhile to crank you up even a small slope.

So there I was (along with Geoff who wanted to see how I went) a year later meeting Tom for my lesson on day 1. It was great to catch up but at the same time, I was apprehensive. How was I going to go after getting through pneumonia, a flare up of my auto-immune disease (which attacks and destroys my muscles by the way) and chemo? This savage trifecta might have knocked me down and tried its best to wipe me out but I’d got up again. Not just on my own strength but because effective treatment is available and also through the power of prayer. God wasn’t sleeping on the job either.

When it came to getting back onto the snow again, that’s where having a qualified instructor really made a difference. Left to my own devices, I wouldn’t have known quite how to get myself back onto the snow. However, Tom had me moving my legs back and forwards to get used to gliding and we did a few other bits and pieces and my ski legs almost came straight back to me. I was pleasantly surprised and somewhat amazed.

In no time at all, I was back up on the magic carpet and we were both seriously impressed. I had pretty much picked up where I’d left off last time. I was fairly smooth aside from some serious jolts and wobbles getting on the magic carpet. We did some snowploughs, turns and once again he drew the `S’ in the snow with his pole to illustrate turning. It all went so well…almost uneventful, which was pretty hard to believe after everything I’d been through. Last year, Tom even had to remind me to breathe on my first couple of days. Talk about progress!

It turned out that Tom was going to be away for a few days and so I’d be having some different instructors. I was initially very wary because Tom knew me so well and I hate having to explain my issues over and over again. Tom had also been quite literally my tower of strength last year. I am quite tall and when I fall over, it can be quite difficult for me to get myself up again even on land let alone on slippery skis in the snow. I knew Tom could do that. It really helps when you know someone knows you in this way and can help you.

Yet, while Tom and I are great mates, it was good for me to go with the other instructors because they each brought something new or emphasized a different element and so I developed quite a lot of depth to my skiing. It also meant that I came to rely more on my own strength and appreciate that it was me and not just Tom that was bringing about my success. I was practicing for an hour every day in addition to my lesson so I’d made quite a commitment to improving my skiing and was working as hard as I could. While practice might make perfect and it is tempting to try to get value for your ski pass, I do have a “smaller engine” and I really had to pace myself to get through the day. Two hours of skiing for me was my limit.

Close up a snow gum. They are so tenacious, enduring often extreme conditions yet so beautiful.

Close up a snow gum. They are so tenacious, enduring often extreme conditions yet so beautiful.

While my first day of skiing went exceptionally well, I hit an unexpected snag. Someone took my skis. Everyone stacks their skis on the racks provided and given that it’s mostly hired gear, you can understand people getting their skis mixed up. However, I had been using Geoff’s own poles and these were clearly labelled in not one but three places. At first, we spotted a pair of similar skis near where I’d left mine and thought there had been a mix up. Night skiing was on so people were still hanging around at the end of the day waiting to go out again so there were still quite a lot of skis out there. Soon those skis had been claimed and things were looking bad. Geoff rang through to the ski hire company and fortunately, someone had dropped my skis back to a ski hire place in Jindabyne. It turned out their skis were a different colour to mine on a different rack so you’ve really got to wonder what they were thinking. There I was with all sorts of memory issues from chemo brain yet someone else mixed their skis up and took mine!! You could say it takes brains.

That night, Geoff logged in and check out our ski stats. While my altitude metres were pretty woeful and that included my trip up to mid station as a walker to get my hot chocolate, I did actually score the most lift rides for the day. That’s the advantage of taking the magic carpet. It’s short and sweet.

The easy way to get down the mountain.

The easy way to get down the mountain.

As pleased as I was with my progress, the mountain was still looming ahead. How would I work up the courage to get down the mountain again?

I still didn’t know.

Stayed tuned for further installments!

xx Rowena

Back to the Mountain…Almost!

The interesting and often challenging thing about being part of a family is that you not only get to go on your own adventures and do your own thing, but that  your family also takes you on all sorts of journeys to places you would never, ever consider going. As a result, you find yourself stretched, pulled and even contorted in all sorts of directions you never thought possible and if you don’t snap somewhere along the way, you actually stretch and grow so far beyond your perceived limitations and you emerge your own personal super hero. I understand that you might not have seen my lasoo, but I am Wonder Woman by the way!

Quite often,  I at least, find myself thrown in the deep end, way out of my depth on these adventures. Thrashing my arms around in the swirling vortex, I feel myself about to go under and yet  I somehow find my strength and go on to exceed even my wildest expectations. Amazingly, the frightened little mouse emerges from her ordeal a lion, even if my roar is still a little soft.

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Family Portrait 2012- I had serious breathing troubles climbing up the hill.

Given my struggles with my autoimmune disease which attacks my muscles and lungs, these challenges can be terrifying and intense. However,  my fear is counterbalanced by my intense desire to be an active part of our family and be able to do things with them. Sometimes, these challenges involve relatively simple things like taking the dog for a walk, walking to the shops or being able to go the park after the school. However, every now and then some big challenges come along and it doesn’t get bigger or more terrifying for me than our annual ski holiday.

The rest of the family are mad skiers who have been checking the snow reports for a few months now and started crossing down the days to our next ski trip as soon as they exited the slopes last year as green oases were opening up and the alpine streams were flowing fast.

Enjoying a Toblerone Hot Chocolate at Mid-Station, Perisher.

Enjoying a Toblerone Hot Chocolate at Mid-Station, Perisher.

I, on the other hand, prefer traveling up and down Perisher’s Front Valley on the chairlift, stopping off at mid-station for a decadent Toblerone Hot Chocolate served with a marshmallow snowman on a swizzle stick and walking through the snow taking photos. However, there was also something about the allure of skiing which sort of drew me in…no doubt, seeing how it made the rest of the family glow!

Two years ago, we took the kids skiing for the first time. They, and of course, my husband had a mad time and came home totally ski obsessed. I didn’t go skiing that time thinking that it wouldn’t be possible. This idea was challenged when we met the para-olympic ski team training down there and they put me onto the Disable Winter Sports’ Association. I don’t use a wheelchair and so there are some things they can do that I can’t.  I wasn’t sure if I’d make it down the hill in a sit chair and didn’t think I’d ever be able to pull off conventional skiing until I met my instructor. Yet, this meeting provided the initial spark.

Thank goodness  you don't have to take on the mountain alone!

Thank goodness you don’t have to take on the mountain alone!

This spark grew into something of a determined flame.

A dream was born.

I was going to turn my mountain around. Instead of climbing up the mountain like so many garden-variety adventures, I was going to do my own thing and ski down the mountain instead. I was initially going to do it as a fundraiser but in the end decided that it was too much to organise and that I was better off just making sure I reached the bottom on the mountain. You could just imagine organising some kind of huge event and then being too scared to go down and instead of being the all-conquering hero, being rescued rather red-faced by ski patrol in the ski-do.

Anyway, you’ll read in a previous post that I actually made it down to the bottom of the mountain. Of course, I didn’t feel like the conquering hero at the time. I was too busy shaking in my boots and relieved it was all over. Yet, I’d done it. I had conquered the mountain!!

However, instead of this achievement being the finale for what had been an amazing year of personal achievements, it actually signalled the beginning of a serious fight to save my life. While down at Perisher, I developed the beginnings of the chest infection which developed into pneumonia  and this pneumonia became seriously life-threatening. My lungs were almost cactus according to my specialist. The pneumonia meant new CT scans of my lungs and these showed that the scaring or fibrosis associated with my auto-immune disease had progressed and was now “established” not “mild”. This development resulted in some very serious medical appointments but then I was offered chemo which, at the time, felt like a life raft to a drowning soul. The chemo worked but it has been a long road and I’m not back yet. Lungs have improved from 43% (the worst was unrecorded) to 60% and my lung specialist was “impressed”. I don’t think he’d expected that. My muscle strength is also pretty good. Most of the problems I had relating to my auto-immune disease have improved significantly but ironically I’ve been battling “chemo brain” and have dreadful troubles with my memory and any sense of time. Multitasking of any sort is impossible. I am dependent on lists, alarms and the occasional cattle prod from Geoff, the kids or the pile of school notes.

After going through all of that and I must admit that I somehow successfully managed to squeeze my violin exam and Christmas in between it all, I am rather apprehensive about returning to the snow this year. I remember all those awful out of control feelings as my skis took off seemingly well ahead of my body and the absolute nail-biting horror of looking out from the top of the mountain and seeing the village way, way down below. I felt like I was perched on the very edge of the world about to fall off. Do I really need to go through that level of fear all over again? Isn’t doing it once and knocking it off my non-existent bucket list, enough?!!

Of course, I have replayed that horror over and over and over again as I prepare for my return to the mountain. As much as I feel like letting that fear engulf me and running as far away from the mountain as my ski boots can carry me, I’m also determined to show that mountain that I mean business. That it’s not going to get me again. I can beat the mountain and I can also take out the muscle disease, the dreaded lung disease and I am going to be so much more than a survivor. I am going to be an almighty conqueror. I’ll put in a little prayer request at this point because I need to acknowledge the one who is the wind beneath my wings. I know prayer has helped to get me where I am and I’ll certainly need it as I conquer the mountain again!

Out walking the dog preparing for our ski holiday.

Out walking the dog preparing for our ski holiday.

So I ask you to think of me as I keep walking the dog to get myself fit for this latest challenge on my journey. I have already taken so much more than the first step. I have conquered the mountain before and now all I need to do is go back. That is what it means to be brave!

I can do it!

I can do it!

I can do it!

Wish me luck!

xx Ro

PS: To all my overseas blogging mates who have real mountains to climb, you might find my angst about skiing down what could be seen as a “hill” a little petty but where I live, it is flat so even a little knoll seems significant. We can’t all have Everest in our own backyards (although I must admit, I’m sure Everest lives inside my head and challenges me each and every day as I stagger out of bed!)

PPS. I should point out that while I am more afraid of tackling the mountain this time because I have been down there before, at the same time,  I have been able to reassure myself that I am in pretty good physical shape and I can also reassure myself that because I’ve done it before, I can do it again. I will also have my instructor to help me. It’s great to know that we don’t have to conquer our mountains alone.

I am also looking forward to skiing more with Geoff and the kids hopefully beyond the learner’s magic carpet this year.

Gee…now I really am starting to sound like Wonder Woman and I might even confuse myself.

 

 

Death to the Christmas Tree

When it comes to getting the kids ready for the start of the new school year tomorrow, I only had one goal.

That was to get rid of the Christmas tree.

Anything else would be a bonus. I could send the kids to school in their pyjamas or even without any lunch. The school would sort that out…particularly when Mum is having chemo. However, no one else could save us from the dreaded Christmas Tree Curse. Only we could save ourselves!

No doubt you’ve heard about the Christmas Tree Curse, although if you are anything like me at all, you can’t remember how many days after Christmas you are supposed to pull your Christmas tree down either. That’s right. There’s a particular day you’re supposed to pull your Christmas tree down or you’ll have a bad year or experience what I have coined “The Christmas Tree Curse.”

Now, I’m not superstitious or anything silly like that but when your luck has been down, turned around and is currently behaving its self, are you prepared to take a chance? That Christmas tree might have looked all sweetness and light at Christmas time all decked out with baby Jesus, Santas, stars, angels, tinsel and flashing lights but all that might well change if you don’t watch out. That innocent looking Christmas tree  could well be out to get you!

However, the Christmas tree curse wasn’t why I was rushing to get my Christmas tree down before school goes back. Well, considering it’s almost February, you’d be right in thinking that I haven’t been rushing to get our Christmas tree down at all. Indeed, it is now more than a month after Christmas and at the rate I’m going, perhaps I should just leave the tree up for next Christmas. I’m sure Santa and his elves along with many kids are already counting down. However, our Christmas tree won’t be hanging around. We have a real tree each year and while it’s always been technically dead, now that it’s turned brown and the needles are crunchy, its more than official.

We’ve been away and as Geoff not so subtly pointed out, you can’t take your Christmas tree down if you’re not home.

That’s very true but we still need to be ready for the new school year…organised!

The start of the new school year is just like the start of the year itself although instead of being called “resolutions”, these good intentions are set in a bit more concrete and are actually called goals. This makes them feel much more real almost like places on a map than castles in the air.

This year, I’m particularly keen to start off on something of a high note because I know it’s a rapid slippery slide down hill. Instead of falling srig and perhaps if you start further up the hill this year, you might not end up face down in the mud at the very bottom of the hill by the end of term. Knowing that I’ll be having chemo fortnightly throughout first term, I’ve actually felt more motivated to get my act together and perhaps be anally organised just to have a hope of getting my kids to and from school on time and their basic homework done. I’m not talking about becoming a Supermum or anything that radical. I’m just looking for a pass…your standard C.

That leaves me with one rather desiccated Christmas tree to get down.  Those decorations need to be packed up and Christmas needs to go to bed. Good night.

However, I’m not sure if I can get the Christmas tree down or should get it down. Ever since the kids were babies, we have elevated our Christmas tree and set it up on top of our combustion heater about a metre above the floor. At this point, I’ll just remind you that I have muscle weakness, poor coordination and I am currently on chemo. This is not the sort of body that’s in any fit state to go climbing Christmas trees. I need to keep my dodgy feet on terra firma. Behave myself. Look after number 1 and apparently that means me. I don’t know if you have ever read any of the Hairy McLairy Series of books but there is a delightful Christmas book where Slinky Malinky the svelte black cat climbs up the Christmas tree. Well, you can be sure that I am no Slinky Malinky. I am Mummy McClunky who goes bang and bumpy. I trip over the smallest crack in the footpath with sometimes disastrous consequences. I shouldn’t even be thinking about climbing up that Christmas tree but I want that tree gone and I want this family organised for the new school year whatever it takes. I mean whatever it takes!

That means getting rid of that tree this very instant!

Now, it’s time to put my thinking cap on top of my battling chemo brain. Can I find a way?

Is there some way, I could get that tree down without climbing anything? I have two more than capable assistants. So as much as maybe we should wait for Geoff to get home, you always knew we were going tackle this tree and get it down and out. I must admit that it’s this cavalier type of thinking that keeps Geoff very busy sorting our Rowie-made disasters! There’s always some small detail which I manage to overlook. However, it’s usually not such a small detail after all. More like a huge gaping hole and I’ve inflicted major damage as a result.

I am off to survey the damage now. Plan our attack. It’s going to be a bit like felling a tree inside our house…timber! I can see that tree falling down….falling down with our violin angel still sitting at the top and I have to make sure she comes down safely. Doesn’t break. She’s very, very precious. Need to do this carefully and think like Geoff instead of my usual impetuous self. Plan ahead, look out for the risks.

Perhaps, I should’ve checked the tree out before I went all psycho and catastrophosed the whole thing. Now, that I’ve assessed the tree, the jolly thing has shrunk considerably. I don’t need to climb anything. I can just reach out and snip the string and grab the tree. Way too easy peasy for a chronic catastrophiser like myself.

So once again, I have managed to inflate a surmountable problem into a huge inflatable monster. You know like one of those advertising inflatables which you see on top of car yards and the like. They’re so big that you can see them a suburb away. Well, I’ve done that again and I’ve gone through this whole drama about how I can’t do things because of my muscles disease and that I shouldn’t take the risk of climbing up the tree when I didn’t need to climb anything at all. I could handle the situation without all that need for drama and self-doubt. I could do it.

What I do need to do is beat myself up with a stick because I can do it. I really can do it and I’m going to get rid of that tree right now as soon as I’ve photographed it for posterity….the biggest Christmas tree in history.

Several hours later, I think we’re all ready for school. The kids made pizza again for dinner tonight and their skills are improving and I just need to stop myself from taking over. I’ve even made them some somewhat healthy biscuits for morning tea and they’re taking left over pizza for lunch. We’ve had no luck betting them to eat their sandwiches so hopefully this will work.

Anyway, what I really needed tonight was what always eludes me…an early night!!

Goodnight.

Xx Ro

Hurray! V for Victory!

Yes! The treatment is working and the good news is that my blood test results are right down in the remission zone…the best result I could have asked for. I’m absolutely stoked!

Thank you! Thank you! Thank you!

I am really feeling exhausted now. Very, very tired but I really wanted to share my good news with absolutely everyone who is traveling along this journey with me, beside me or especially going down the same or similar roads themselves. We are not alone and we all have to believe in miracles. Have faith. After the success of skiing down the mountain in Perisher last year only to run straight into pneumonia and a life threatening flare up of my auto-immune disease, I really doubted that I still had the strength or capacity to turn my mountain around again.

Skiing down the mountain at Perisher in August 2013.

Skiing down the mountain at Perisher in August 2013.

Well, to be perfectly honest, I didn’t. It took a team of highly specialised doctors, toxic drugs, fabulous nurses, support from family and friends, a highly entertaining and philosophical driver to and from my treatments provided by Carer’s Respite. A wonderful husband who is married to a mad writer with a chronic illness (I’m not sure which is worse but unfortunately being married to a writer or any other form of “creative” doesn’t entitle you to a Carer Payment or any other kind of practical support. My chronic illness does.) My parents and brother, particularly my Mum, have looked after the kids as well which has given me the capacity to rest and heal. They also let me stay in their soon to be home at Palm Beach in a most stunningly inspirational location. I’m sure this has really boosted the healing process. I’ve also been swimming in the pool to improve my lung capacity. This result has taken a lot.

Above all else, I believe it took God. I firmly believe that he is with me. I still don’t understand why he didn’t stop me from getting this disease in the first place. Yes, I do actually. The way I see it, everyone has their lot…their challenge. I don’t know whether this is designed to stretch us and help us to grow but that’s certainly been the end product of my experience. That said, I have also chosen growth over anger, stagnation and bitterness. Our lot isn’t easy either. It is very tough on our entire family, extended family and the ripples resonate out to friends and even strangers. When it flares up, it is pretty demanding and all-encompassing.

My situation isn’t what I’ve call a healing. I’ve gone into remission and this more a case of management, rather than cure. This chemo was round one. I will now have 4 fortnightly sessions until my specialist gets approval for my next treatment a drug called cellcept. I haven’t looked this up yet so goodness know what that’s going to do to me but as I’ve said before, I’ll do anything for love and the list of nasty toxic drugs I’ve taken is adding up.

Here is a quick photographic tour of my day. I had intended to take photos of me actually having chemo and lugged my huge SLR around the hospital. Took other photos and forgot the main one. Anyway, as it turned out, it wasn’t my last chemo treatment so further opportunity awaits.

Writing in my journal while waiting to see my rheumatologist. What are the results going to be?

Writing in my journal while waiting to see my rheumatologist. What are the results going to be?

Celebrating Victory with the healing paper cranes at the hospital.

Celebrating Victory with the healing paper cranes at the hospital.

I also wanted to share with you my immediate response when I found out my treatment had worked. When I was first diagnosed with this disease, I had called it “Dermie”. Dermatomyosistis was way too long and unpronounceable. Anyway, soon after my diagnosis I was sitting in the food court in the old hospital when I wrote what turned out to be a very cathartic story about it. In the story, I was being pursued by Dermie, a very possessive lover who was relentlessly stalking me. Anyway, the story ends with a comic twist when I introduce Dermie to the Internet dating site RSVP and he races off and meets someone else. I still remember how much I laughed when I wrote that twist. It felt so good and was so cathartic! I felt all this negative energy immediately pour out of my system. It was just fabulous!

Looney Tunes Metal Sign/Poster - Yosemite Sam

Anyway, today when I heard the good news, I pictured this little cartoon character with twin pistols both barrels pointed straight at Dermie . Bang! Bang! Not only did he shoot Dermie blowing him to smithereens,  he was also jumping up and down on the spot laughing. He was actually happy! Thrilled! This character was totally warped!

Now, as much as I wanted Dermie dead and out of my life for good, I’m not into violence and had no idea who this gun-slinging maniac actually was until asked my dearly beloved husband. Turns out it was Yosemite Sam who I can’t even remember with my conscious brain so I have no idea here he found his way inside my head. (Turns out he’s from Bugs Bunny. Obviously a deeply repressed childhood memory! More therapy sessions required).

However, I’m sure I’ve already mentioned that I’m on a lot of drugs with these treatments and they are definitely doing strange things to my brain. This is absolute confirmation!!  I actually packed a much more wholesome and even spiritually minded book in my bag when I left for the hospital this morning: Conversations with God: An Uncommon Diologue by Neale Donald Walshe. There were no gun slinging cartoon characters of any description!

Perhaps, the devil made me do it…

xx Rowena

Back home with my beloved doggie...a selfie.  Ended up writing down there debriefing myself...and him , of course!

Back home with my beloved doggie…a selfie. Ended up writing down there debriefing myself…and him , of course!

Chemo Adieu and Getting Through

Wednesday 22nd January, 2014

8.30AM Coffee and muesli

There is silence and almost perfect stillness outside. The cicadas are quiet…absolutely quiet, which is rather odd. Depending on how you feel about the sound of cicardas, there has either been this constant deafening siren blaring throughout my time at Palm Beach or the rhythmic chant of an Australian summer. I have always loved the cicadas and always have to pick them up and feel them walk up my clothes with their sharp claws. I get an absolute thrill even now at the more mature age of 44 when I manage to spot one and pick it up and hear a loud protesting buzz. While I’ve been here, I have also been something of a cicada rescue service. Only this morning, I spotted one out on the balcony under the gaze of a feral Noisy Minor bird and moved it on. The silly thing was just sitting there completely paralysed as though you couldn’t see it. Hello! Unfortunately, the cicada on the window sill wasn’t quite so blessed. It’s been captured in a spider’s web and mummified in silk.

There was heavy rain last night. The dog is soaked and the canvas outside has been painted a very dull grey. I don’t know whether the tide is going in or out. I should. I just don’t seem to have that knack of looking out there and instinctively knowing. No doubt I could probably work it out but when I check back soon, I’ll find out anyway.

I feel like I am on very borrowed time today. It is the last day before my last chemo treatment. Tomorrow, I am also finally meeting up with my rheumatologist to not only find out what happens next but also get the verdict. Hopefully, it won’t just be a V for verdict but also V for Victory. Oh how I would love a V for victory! I have had so many serious scares with this disease and so far we’ve been able to fight them off and win. It really has been a very long bombing campaign with me scampering along the ground running for cover or like the people of England sheltering in the tube during the London Blitz, bunkering down and staying out of sight.

To be perfectly honest, I haven’t really been thinking about getting my results all that much. I’ve been really focused on my writing as I have been mega inspired and trying to get all that written down has been a massive job. I am working on a diarised account of my chemo experience, which ironically is intended to be a funny book. When I first considered making it funny, I was rather sceptical. “As if!” Here was this hellish experience of having all-consuming nausea and throwing your guts up not to mention overwhelming gripping fatigue. I just expected to spend summer in between lying in bed upstairs with the air-conditioner on and rushing to throw up in the loo. Obviously, not very attractive postcards from Palm Beach but it was only six weeks and such a short blip in my life that it was nothing…as long as the chemo worked.

At times, I have almost forgotten or put aside the fact that I am having the chemo for a purpose. The purpose isn’t to survive chemo and to get through the treatment, although in this instance you would definitely say that is secondary goal. Chemo is toxic, nasty and in itself can knock you off. The real goal is to gain control of the dermatomyositis as my lung specialist would say and get me into remission again.

However, this is the incredibly scary part because that is only something we can influence. We can’t control it. That has been proven time and time again when this wretched disease flares up yet again and reasserts its dominance. Reminds me perhaps that while it might not be the boss, it has aspirations! Yet, I’m a fighter. I’m the quintessential Aussie battler. When I said that I would do anything for love and I would fight this disease with absolutely everything I’ve got and more, wretched Dermie didn’t know who he was up against. He has to deal with Roweeee. That’s Roweeee with four eeee’s swinging from the chandelier like Tarzan. I am going to win…at least I jolly well hope so!

The trouble with fighting this auto-immune disease is that I am actually fighting myself. An auto-immune disease develops when your body attacks itself so it is actually you fighting yourself. Now, the trouble is that when you are fighting yourself, you are evenly matched. I’m no expert in military strategies but it seems like I am never going to win in any kind of hand-to-hand combat. We are evenly matched. My only hope is some kind of very unconventional, surprise guerrilla attack. Or perhaps by blending in really well with my surrounds and just quietly disappearing. You know those games of hide and seek where the child hides so well that everyone else has given up trying to find them and they’ve moved onto something else and Mum is just about to call the Police when they finally poke their little head out again.

However, most of these manoeuvres are out of my hands. My rheumatologist is the Commander-in-Chief assisted by the lung specialist. I am sure they are not acting in isolation either and have consulted other world experts in dermatomyositis. Given how rare this thing is, that’s hardly a huge effort. There is a Myositis Clinic at John Hopkins in the States and you would expect doctors to confer and gather data on this rare disease. We all need to do whatever we can to make it easier for those who are following in our wavering footsteps.

I am finding it particularly helpful to write about my chemo experience. I am not just doing this for myself and to fulfil my long held goal and need to get a jolly book actually published but I’m doing this to help others and to be their chemo friend. You really do need someone to chat away and talk to or at least I do and you’re not always well enough for visitors and to actually talk. It’s more a case of chatting away in your head which means you’re not going through this thing alone. You have a friend. I don’t even really know who I am talking to as I write. When I was in high school, I had a diary and it was addressed to Dear Anne as in Anne Frank who wrote her experiences of being a Jewish teenager in hiding to “Dear Kitty”. Of course, this mystical diary person understands absolutely everything you are going through without query or judgement. I can see them sitting there on the edge of the couch with a cup and saucer in hand intently listening to each and every word I say.

Of course, this journal world is so different to the real world. For starters, I am alone down here at Palm Beach. I have no one to talk to. Correction…I have the dog. While I must say that he makes almost the perfect companion and is one of the best listeners I’ve ever come across, there are certain distinct differences that I really can’t overlook. The dog is a dog and even if I do connect with him emotionally and know that he gets me, he can’t be my perfect companion. He’s not allowed in the house and he’s not allowed at the beach either. He is actually rather restricted.

Instead, I find myself chatting in my head and writing in my journal and my blog. My brain is rather hyperactive constantly beavering away. I am so very inspired and no doubt a bit manic from all the prednisone. It might be destroying my bones but it’s powering up my mind!

Back to tomorrow.

Tomorrow is V-Day. V for verdict and hopefully V for victory. After exploring Beethoven and having my healing Reiki experience and photographing waves at Whale Beach, I really need to focus and psych myself up for tomorrow. What will it all mean?

These are the three outcomes:

  1. CK reading is back under 200. The treatment has worked!
  2. My CK reading has come down somewhat but isn’t in remission and the treatment has been partially successful. I guess here we’d be looking at a reading in the range of 300-600.
  3. It hasn’t worked and my CK reading is over 600.

Of course, I would love the treatment to work! I would love to be in remission! I would love to send Dermie running to the hills lugging his heavy cases and watching his clothes tumbling out along the beach behind him. I would dearly love Dermie to get well and truly lost never to return. Oh please no one give him a compass! I don’t want him back!! No! No! No! No! No!

But we’re not living in a perfect world. Although I have made a conscious decision not to look up the stats on this treatment, I know that it is not 100% guaranteed. I know not everyone responds. There is a gap and it is a significant gap and I also know that I have a fairly aggressive and very persistent form of the disease. As I said, I am fighting myself and I’m one hell of a fighter! I don’t know what I’m going to do if it hasn’t worked. Oh yes I do. I’m going to cry! I’m going to cry and cry and cry and cry until my tears fill up the bay. Then I’ll fight back. Keep going. Persevere. We’re going to get this disease even if it gets me first.

By the way, the tide is coming in. I didn’t need special tide reading skills after all. I just had to wait.

I just rang Geoff to see whether he thought I should ring my GP for my results.

In a way it made good logical sense to get the results today to see whether Geoff should take time off to go to my appointment with Professor tomorrow. Plan ahead. I also probably preferred the idea of getting bad news in the privacy of home when I could become a blubbering mess without having to try to keep it together. I know hospitals are places of sickness and dying and that it is perfectly acceptable to fall apart there but even in the midst of utter sadness and heartache, I’ve still wanted to keep it together. I have dreadful memories of clutching my one and only tissue while praying in the hospital chapel. Naturally, that one and only tissue couldn’t handle the job.  It was like the little boy with his finger in the dyke…totally overwhelmed. I remember trying to fix myself up enough to bolt into the hospital toilets and then went into the Pink Ladies and bought a packet of tissues. It was funny because the lady said something about hayfever being bad this time of year and I don’t know whether she was just helping me save face or whether I’d fooled her completely.

How stupid of me! There I was a mother of two young children staring death in the face and I’m trying to keep up appearances. Trying to stop the jolly dam from flooding when I really just needed to cry and that was fine. Even in that darkest of dark hours, I was trying to be strong. Stand tall. Stitch myself back together and not fall apart. In a sense, these are good qualities especially for a fighter. You have to dust yourself off and get back into battle again. You can’t afford to lie face down in the mud or the enemy will get you for sure!!

That said, it is quite permissible and indeed perhaps required that you have a break so your wounds can heal. You rest and renew your strength so that you are better equipped to fight. No point dragging yourself into battle. You’ll never be able to swing your sword.

So far I have only mentioned my doctors in terms my combat team but it is a multi-disciplinary team assault. I am seriously praying that God will heal me using whatever means. He is really the ultimate Commander-in-Chief. He is the one who decides whether I live or die although I do actually believe that he has given me quite a lot of say. I didn’t have to go and get that first CT scan of my lungs two years ago. I didn’t really have symptoms of Institial Lung Disease (ILD) at the time. I had read an article recommended by the Myositis Association of America which said that ILD was more common in myositis patients than previously believed. I have the JO1 antibody which means that I am more at risk of developing ILD so I was already forewarned. I also knew that with any problem, you are best hitting it early to get the best possible outcome. That’s the old stitch in time saves nine approach. Those CT scans were devastating because my very worst fears were confirmed. I had ILD. However, the good news was that it wasn’t active and it was minor. I was safe…at least for now. The other good news was that we were well prepared if and when it went nasty. I now had a lung specialist who knew me and the disease and he also worked with my rheumatologist. I had a team. So when the CT scans showed that the ILD had progressed and had become “established”, I already had a team in place. They met. Worked out the best approach and bang it happened straight away inspite of Christmas and the fact that nothing even happens in Australia in January. We were onto it.

At the same time I’ve been having chemo and zapping my body, I have also been exercising. I’ve been swimming 20 laps of the pool around 4 days a week. I really don’t like getting wet and I do enjoy it once I’m in but this isn’t something I like. It is something that’s a conscious grudge effort. I do it because I am trying to get the very best out of whatever good parts are left in my lungs. I am focusing on the cells which work, not on the cells which don’t. I really don’t know enough about how lung cells work and I know there’s scarring and they talk about the fibrosis being permanent. Yet, at the same time, I think about trumpet players and swimmers and I’m not sure whether they actually have scientifically proven bigger lungs but that’s the impression I have. You hear about all those Olympic swimmers who started out swimming to improve their asthma and it works. Geoff’s uncle Claude was told he was going to die from lung disease. He was a smoker and he quit immediately and survived that crisis.

When I think about the statistics, I am trying to think of what I can do to get myself down the winning end of the equation. Somebody is going to die very quickly from this disease and someone else is going to respond brilliantly to treatment and go into a 100% perfect remission and never hear from this wretched disease ever again. How do I give myself the very best chance of being the winner and having my V for victory? What can I do? Me as a small, seemingly insignificant untrained individual…what can I do?

Probably the very most important thing I can do is own my disease and take responsibility for it. I routinely monitor my CK levels so I know where I stand. I don’t just walk away and leave my disease to manage itself. I don’t turn my back and say “I don’t want to know”. I am checking. The frequency of these checks changes depending on the results. I’ve had quarterly blood tests and I’ve had them weekly but I’ve had them. They keep me informed and keep my medical team in some kind of “control”.

If you have read my blog, there a story on there about kayaking and how maintaining your goal takes constant monitoring and correction. That you just can’t let the kayak drift or you’ll have to expend alot of energy to get back on course.

That’s what it is like with this disease.

Taking responsibility also means that I know my own blood test results and I file my reports. I have a bit of a mental picture of how things have gone over time and what has been the most likely trigger for my flares.   So far it appears that the prednisone can’t go below 10mg and flus and cold don’t help either.

Doing whatever it takes to maintain a positive mental attitude. You really need to be in peak mental shape to fight a chronic, long term life-threatening disease especially when you have a husband and little kids and a Mum, Dad, brother, Aunties, Uncles, sister-in-laws, nephews, nieces, cousins, friends.

Since I’ve been having the chemo, I’ve pictured like a set of scales. Bad stuff on one side and good stuff on the other. The more bad stuff which piles up, the more good stuff you need to do to counter balance it. So when it came to me and the chemo, I asked my Dad if I could stay at the beach house throughout to give myself the very best chance of getting through it emotionally and spiritually. I’m a big fan of distraction and with chemo you’re not allowed out in the sun and I figured I’d be pretty crook but I thought I could sit inside and watch the pelican glide back and forth hunting for fish. Watch the ducks. They’re always a bit of fun. There was also the pure smooth serenity of the water not quite sitting still but gently flowing somewhere and the variations between high and low tides.

Being here gave me a huge, massive psychological edge versus being at home which has borne the brunt of 8 years of chronic illness, medical appointments and just plain discouragement. As much as I could have used this time to get the house sorted out. Decluttered and had the kids will organised for school, I needed to get as far away from all of that for my own well being as I could. I didn’t need to be immersed in problems. Crap and all the thing which needed to done while I’m trying to heal my body and mind. I needed to be kind to myself.

Unfortunately, the rest of the team hasn’t had that luxury. Geoff had last week off work and spent the week down here. He returned home Monday night to find that the fish tank had leaked on the carpet. He is still battling with the car which has had endless troubles over the last couple of months and stupid problems at that. The Christmas tree is still up with no sign of coming down and then there’s work. Meanwhile, my parents have the kids. My Mum’s not well. My brother’s not well. Dad is starting to notice rheumatoid arthritis moving into one of his fingers and it is rapidly starting to twist. Dad is running his own business while helping to watch the kids. Yesterday, Mum had some pre-schedule dentist appointment so Dad had the kids and he took Miss off to the dentist because one of her baby teeth had fallen out some time ago and there was no sign of the adult tooth. I found it hard to believe that in the midst of my chemo treatment that we’d find out that Amelia was missing a tooth but that is a bit of a family thing. Fortunately, that was fine. It is just taking its time and Amelia was proudly showing off the dental floss she’d been given.

I have to admit that I don’t think the rest of the team was thrilled when I mentioned that I’d had a healing massage and had been watching the waves. Talk about luxury self indulgence!

This just goes to show that there is quite a difference between what the person experiencing the problem goes through and the experiences of the support crew. It is like the duck. I am gliding almost effortlessly along the surface while the rest of the family are my feet madly paddling trying to keep me afloat. They are literally busting a gut so I can rest, relax, recuperate and take it easy. Now, I haven’t exactly been doing nothing and I am actually hoping that my writing will translate into some kind of income that can also keep our family afloat. As much as all this writing is cathartic, stimulating and fun, I do also view it as my job. The best chance I have of trying to earn a living. That’s right…a living not a dying!!

I am also making a mental note to self that the support crew needs a break and that we need to bring in the support crew for the support crew once we get home.

This list should be set up as more of a mind map than a numbered list. All of these factors are important.

Talking about the support crew, reminds me of the importance of the support crew. I would be dead on my own. No doubt about it!! I have had a GP who has seen me through this process and it really has been a difficult process for her. Rare diseases aren’t easy and everybody prefers to be in their comfort zones. Know what it is. Know what they’re doing. Rare disease aren’t like that. There is little precedent. It’s mostly unknown. She bends over backwards to help me and we often have a laugh despite my circumstances. She wants to be played by Kate Blanchett when my book finally becomes a movie. There is my wonderful specialist who has always taken an interest in my disease. He brought his students round to see me and he is fighting tooth and nail to give my kids their Mum. I only know both my specialists in a very small realm but I know they are good person and they would do whatever they can to save my life. We might and no doubt one day will ultimately lose the battle but they have given their all and then some. In addition to these medical people and my family which I’ve mentioned, I’ve had countless people pray for me and I’ve talked the ears off a few hospital chaplains and one of my dear Pastor who isn’t well himself right now. I have wonderful friends who have picked up the kids, cooked meals and listened. I have been incredibly blessed but at the same time, I still try to give. I don’t have a monopoly on adversary and back luck. Everybody has their cross to bear.

Distraction, otherwise known as “keeping busy” is also a wonderful thing. During this chemo experience, I have had various little projects. There has been my “teach the kids how to cook” project which has also turned into a real cooking expedition for me as I’ve extended my cooking beyond my usual chicken schnitzel and roast lamb. I’ve really been enjoying my weekly serve of Atlantic Salmon. It has also been an eye-opener to see the kids struggling with the grater and the peeler and realise that cooking is also building up their fine motor skills and confidence. Searching for recipes etc and putting my energy into this project certainly helped distract me from my treatment and whether I was going to live or die. It gave me a sense of purpose. I should have mentioned this sooner that the cooking project also brought the kids and I closer together and it was fabulous to not only spend time together but have this as a joint project. They both seem to enjoy cooking and largely embraced it.

While I have ignored my violin a bit while I’ve been here, I have actually kept up my piano practice and Fur Elise is progressing well. It has been very positive to put my energy into my practice and slowly but steadily notice significant improvement. Only two weeks ago, I was bumbling through the start of Moonlight Sonata and couldn’t play C major scale with hands together. My hands weren’t in synch and it took a couple of goes to get it right. That’s pretty humbling when you learned the piano for over ten years and while I know I haven’t practiced and virtually haven’t touched a piano in ten years and have maybe even avoided the piano entirely…shunned it…I never expected that I couldn’t play at all. That rusty would become rusted.

It’s been very therapeutic to tackle Fur Elise and through doing this daily practice, actually feeling that I can play the piano.

Mum has now actually suggested that I learn to play Chopin’s Revolutionary Attitude. I had to have a bit of a laugh at this because suddenly I’ve gone from struggling to play C Major Scale which is very definitely in the “elementary my dear Watson” category to being told I can take on a concert piece. It sounded crazy to me but there has been a precedent. Mum reminded me that as much as I don’t like to think of myself as a chip off the old block ie my Dad that Moonlight Sonata and Fur Elise are also his pieces. Not long after Mum and Dad were married, Dad apparently decided to teach himself how to play Chopin’s Revolutionary Attitude while his mother was away overseas and there was a big dinner and recital in their flat on her return.

If Dad can do it, I can do it!!

Another adventure begins. I hope Beethoven doesn’t mind. We have been what you’d call “exclusive” for quite some time.

You could also rebadge these distractions and call them goals…a sense of purpose…something to live for. Naturally, I have my kids and family, friends to live for but I also need something beyond that. Something that extends my skills and challenges me. Not that the kids aren’t challenging but even as a mother who is potentially dying and leaving her kids, I still need my own world…my own life and to extend and maintain my self and my own space and identity just like most other  women. I just can  not live and breathe for my kids especially as I may not die young at all and I still need to plan ahead and have a life…not just a death!

I’ve had various goals which have sustained me. Most notably, there was my goal to ski down Perisher’s front Valley which I pulled off last year. I did my preliminary violin exam and achieved my A. I’ve worked part-time and done the publicity for the school. I have also poured myself into the children and tried to help them reach their potential often in opposition to themselves. Goals are vitally important for maintaining that sense of purpose which helps get you over life’s speed humps and even steep mountains and doesn’t let you get bogged down in the mud.

Humour is an essential survival strategy. It is quite a common approach for someone going through severe adversity to turn it into a joke and laugh about their predicament…just like my chemo for Christmas. “All I want for Christmas is my chemo” I pictured a little girl singing all I want for Christmas is my two front teeth with her cute gappy smile and there I was not so small and cute wanting chemo.

Somehow you need to control the bad thoughts. My psychologist introduced me to the wonderful word: “catastrophising”. This is where you turn your bad news into a catastrophy of world-ending proportions like pumping up a balloon with hot air…off it goes. You setback has become a disaster. You’ll going to die. We’re all going to die. The entire planet is doomed!!!

Instead, you have to stop. Take a few deep breaths and consider things from a more realistic perspective. Is this situation really as hopeless as it seems? What, if anything, can I do to make things better? How likely is the worst case scenario? I am slowly getting better at this but it is a learned skill like anything else.

A problem shared is a problem halved. Talking things over with a friend really helps and keeping a journal is a great way of doing this as well particularly if you want to keep things private. Sharing a problem may not mean talking either. It might involve practical help. You don’t have to go it alone.

I just thought of this one but solving the problem is actually the best way out of any crisis. Now, my medical situation is more complicated but for others just getting on with it and not procrastinating is possible.

I should point out that while I’ve been tranquilly staring out to sea on one side of the house, the neighbours across the road have decided that my day of tranquillity the very last day before I have my last chemo treatment is the day that they whip out the chainsaw and atone for years of garden neglect. This is the only day this summer that the cicadas have been quiet and now the chainsaws are going. You’d have to agree that’s a bit odd. I just wandered out there in my pyjamas to give them one of those “I’m a %$@#  shift worker. Stop the noise” glance. I would dearly love to go up to them and not so subtly point out that I am currently undergoing chemo and could you please keep the noise down. Oh my goodness that chainsaw is loud. If you have ever complained about cicadas, think again. These things are absolute beasts.

At the same time, that house across the road has been considerably overgrown. After I recovered from the pneumonia, I made a few jokes about what it was really like when Sleeping Beauty woke up. There had been an elderly couple there and the husband died after a long illness. It really did look like the place was returning to nature as the branches enfolded the house. Suppose it will be good for the street to get the place sorted but why did it have to do it today? Right now when I desperately need a nap. I didn’t sleep too well last night and I’m sagging badly falling head first into my laptop.

This sort of noise is one of the downsides of community…the cost.

I haven’t exactly finished this post as such but wanted to get it up today before I get my results and also before I have my last hit of chemo. It still needs work but I wanted to get it up.

xx Rowena

 

Wave Watching at Whale Beach

Here I am sitting on the rocks at Whale Beach watching the waves literally explode as they smack against the rocks. It is hard to describe their incredible force, bursting like fireworks and then cascading through the cracked and creviced rock platform down below and returning back to the sea.

Multitasking out here is absolutely impossible. It’s a case of either write or take photos. I can’t do both. Damn! The frustrations of an imperfect world!

So let me rewind just a little and look through the lens instead of the pen.

The waves are taunting and teasing me. Luring me close with their smashing, violent force only to recede and disappear and fade into a gentle rolling lull. Talk about utter frustration!

Not that these efforts were ever going to be about achieving the perfect shot…getting the big one! The light’s all wrong. It is almost dark and this is a time of low light and shadows. These photography efforts are more a case of just trying the capture the moment as it is and I guess with a hope of coming back at a better time. I’d also like to “play it again Sam”. I was mesmerised by it all. Not just the visuals but also the symphony of sound as the waves beat and whooshed around the rocks and into the cavernous depths below. I would love to share this experience with the world even in its imperfection because it was just so powerfully beautiful and moving. Moreover, the turbulence of the waves somehow reflected some of my inner unrest and the knowledge that I have a hell of a fight on my hands. My journey is currently very intense.

Trying to photograph the waves reminds me of surfing…not that I’ve had a lot of experience on the front. Aside from getting the light right and choosing a good subject, timing is critical. You have to press the button at precisely the right moment or ideally just that microsecond beforehand to compensate for that barely perceptible time lag between the subject and the lens. Timing has never been my strength. In fact, today I wouldn’t even say I ran late. I went AWOL…off the grid…beyond time. Bought myself another watch and I’m hoping that will help. Ro without a watch doesn’t stand a chance!!

In the end, I found myself trying to read the waves to better predict the big ones in advance. While this all sounds like I know what I’m doing, I’d probably have better luck trying to read its palm. I’m no seasoned surfer who lives and breathes with the waves. I can’t even spot a rip. Moreover, although I’ve been spending a lot of time at my parents’ place on the Pittwater side, that’s flat water. There’s barely a ripple.

Yet, while I mightn’t be kind of enlightened wave-watching expert and interpreter, that didn’t stop me from trying. Even though the light wasn’t anywhere near perfect, I still wanted that shot. Every single muscle and cell is primed and on red alert and I was poised on the rocks with my camera in position like that stalking, lurking cat about to pounce on a mouse. I’m watching waiting, observing all those very subtle signs as the water surface curves and tightens but then swells and falls. Of course, the big one doesn’t come while I’m fixated, camera poised. I wait and wait and wait.

As I said, photographing the waves is like surfing. Surfers seemingly sit on their boards for eternity waiting for the big one to come and now I was doing the same!

Waiting is also a big part of photography…huge!

The waves go quiet. There’s absolutely no action whatsoever so I decide to swap my camera for my notebook and pen. In this instance, my notebook is made of paper. It’s pad not a computer.

Of course, now that I’m writing and I’ve packed up my camera, a huge, ginormous waves smashes against the rocks and water shoots up like lava from an exploding volcano. Whoosh!

I am in such awe of its raw, unbridled energy and power. I have always loved watching the waves feeling that all that energy somehow mirrors the raw, turbulent energy thrashing around in my soul. I’ve never been one of those chilled out peaceful types. Definitely, a woman of passion!

Wave hits just as I'm taking a selfie.

Wave hits just as I’m taking a selfie.

Many years ago, I spent hours sitting on these same rocks when my parents had a place across the road from the beach. Back then, I also photographed the waves somehow trying to freeze all that energy and power in 6 x 4. I had a favourite spot… my rock…where I used to contemplate and photograph life, the universe and everything. Indeed it was on this rock that I met a special friend and I was visiting her this afternoon for a healing massage, a chat and very much a merging of souls. She has the most amazing kindness and is such a giver. Such an amazing giver and at this point, I have just absorbed her great kindness as a healing gift. She even gave me a sunflower plant not knowing that I’d written about being the seed a few days ago. Not knowing that I am intending to give my children a sunflower seed so they can think about how they are going to grow and develop this year in themselves (that was in response to astronaut Chris Hadfield’s comments mentioned in a previous post). We are also going to plant some sunflowers and watch them grow. Sunflowers have always been my flower and I’d also written a poem called Sunflower back in my 20s that was one of my signature poems. My friend knew nothing about all these sunflower connections when she gave me the plant. It was so very obviously mean to be. After this fairly amazing time with her, I just felt drawn to go back to the rock where we’d met and complete the process. That’s what took me back to Whale Beach.

After the crash, the waves flow over the rocks like spillt milk.

After the crash, the waves flow over the rocks like spillt milk.

Anyway, as I said, I have spent many, many hours sitting on these rocks. Back in 1997, I at on these rocks while recovering from brain surgery wondering when but more likely if I would ever get better. It really looked doubtful that I would ever get my old life back again. The road back to so-called “normal” was just way too steep…an insurmountable climb!

All the quirks and idiosyncrasies of my hydrocephalus haven’t left me entirely but they have virtually disappeared and I can usually compensate for my remaining weaknesses.

This gives me much hope that we will contain and manage this lung disease and that I will heal…at least enough!

It is a huge leap of faith and very, very scary for me to step out and put my hand out and say: “Please God, heal my lungs and save my life.” Yet, God is my father. He loves me. At the same time, I know that he doesn’t always intervene and we all have to die one day.

You could say this is a bit of an aside and yet it’s not. While I’ve been savouring the absolute beauty here, I’ve also been stepping over cigarette butts stubbed out against the rocks and left behind. It is so hard for me to comprehend how anybody could light one of those cancer sticks consciously and actively destroying the very same lungs I’m fighting tooth and nail to save. These same morons are also littering the environment.

We live in a strange world.

I put down my pen and return to my camera opting to film the wave instead. As much as you want to freeze the wave in 6 x 4, a wave is a living, breathing, and above all else moving experience. It’s not static.

It’s like picking a wildflower and sticking it in a vase. You’ve destroyed what it is. Its spirit has gone.

A wave doesn’t sit still.

I drove home.

It was low tide and I took the dog down onto the mudflats for a walk. After being so absorbed in the turbulent even aggressive surf at Whale Beach, Pittwater was so completely serene almost standing still with just the smallest of ripples caressing the surface. It was so peaceful.

I couldn’t help but notice the contrast between the two. Pittwater reminded me of a Bible passage I have struggled with for many, many years: “Be still and know that I am God” while at Whale Beach I could hear Christ’s impassioned plea from the cross: “My God! My God! Why have you forsaken me?” Pittwater is only round the corner from Whale Beach symbolic perhaps that peace is only round the corner when we’re feeling all consumed by troubled times. Relief isn’t far away.

I must remember that!

xx Rowena