Tag Archives: young carers

Happy New Year

Drawing smiley faces in sifted flour. Teaching the kids to make pizza inbetween Mummy’s chemo sessions Jan 2014.

I was still going through our photos putting a slide show together for 2014, when I revisited this smiley face our daughter drew in the freshly sifted flour.

Naturally, I love it.

Not only because it is such a wonderful expression of childhood delight in the incredibly simple but when I revisited that photo today, I remembered the context. Miss drew that smiley face in the middle of my chemo treatments last year.

You see, making pizza was the first of my “structured” efforts to teach the kids how to cook a meal. As you could appreciate, this wasn’t some sort of preparation for when they move out in 10 or 50 years time and making them self-sufficient. Rather, it was about there immediate here and now. They needed to learn how to feed our family.

Sure, you go into chemo with a positive attitude but seriously as a parent, you do need to consider the what ifs and not just leave your family in the lurch. This is what I and others call: “optimistic realism”. Like many of our cooking efforts, there was a lot of fun, humour and error in our efforts and we were cooking with somewhat “primitive” implements house minding a rather poorly equipped beach house.

Yet, both the pizza and the apple pie both turned out well in the end.

I now find this image very reassuring that our kids had fun and drew smiley faces even in the midst of what really were terrifying times for us all. It gives me a great sense of relief, even though I know we’ve all been through the ringer as well.

You can read our original cooking pizza and apple pie post here: https://beyondtheflow.wordpress.com/2014/01/17/day-3-yeast-pizza-from-scratch-and-quirky-apple-pie/

I would love to hear any of your stories of experiencing joy during a trial!

Best wishes for the New Year!

xx Rowena

A Million Dollar View…My Journey Through Ambulatory Care.

I am up in the clouds again. Being creative, that’s not unusual but right now, I’m literally up in the sky wrapped up in an enormous, sky-blue woolly blanket dotted with a scant scatter of clouds. There is no wind today and the clouds are just sitting still like lost sheep.

Given the view, I could be on a jumbo jet.  Yet, I can actually recline my chair and put my feet up without squashing the sardine in front or behind. There are no screaming babies or in-flight movies either.

The lunch trolley arrives with a much anticipated rumble. It’s four star service with rather humble offerings of cheese and tomato or mock chicken served up on very plain white bread. We are offered a choice of apple juice or Paradise Punch. I always take the Paradise Punch. I wouldn’t mind a touch of paradise as long as it’s not permanent.

My nurse would make a fantastic Hosty, even though she’s not wearing one of the glamorous purple gowns. They’re reserved for the chemo patients.

Inside 12A looking out

Welcome to 12A. It isn’t First Class but it’s certainly not economy either. I am being very well looked after. I haven’t been admitted.  I’m just visiting, having my regular three-weekly transfusion of Intravenous Immunoglobulin (IVIG). Immunoglobulin (Ig) is another name for antibodies, molecules produced by the plasma cell. IVIg is very precious and is currently is worth more than twice the price of gold on a gram for gram basis. On a more comic note, the stuff looks a lot like lemonade… all clear and bubbly. For all I know, it could be sugary sweet as well. After all, I’ve never drunk the stuff!

The views here are first class.  Today, I am facing west and the Blue Mountains form a smeary smudge just above the window sill. Up above there’s only sky. If I stood up, which is a little challenging juggling a laptop, a cannula and a cup of tea, I could see across the historic Gore Hill Cemetery and the Lane Cove River, which flows into Sydney Harbour. The views are much better in the other treatment room where the Sydney Harbour Bridge stands centre stage. It is not the conventional perspective you see on postcards. It’s the back-end view but it’s still magic.  I have always loved The Bridge but since coming here, we’ve become something like close friends, even soul mates. The Bridge has been my strong and silent partner, helping me get through all of this. There have been some pretty dark times in here, especially as an inmate when the “Coathanger” literally held me up.

I’m no longer afraid of needles but it can take a few jabs to find a vein and it certainly isn’t “pleasant”. My veins are pretty obstreperous.  I know there’s blood in there somewhere because my heart’s still beating but my veins have somehow managed to dry up. It’s like trying to get blood out of a proverbial stone. The nurses are extremely patient and accommodating and bring out the warm towels and squeeze toys. They’ll try anything to pump up the volume and believe me especially in winter, there have been some desperate times. My hands routinely turn deep purple and feel so incredibly cold, they’re like lethal weapons. Geoff and the kids flinch when I touch them. I have to warm my hands up first.

Yet, the nurses persevere. They take my hand and inspect the back of my palm surveying an arid, desert landscape. I hope and pray that they’ll get the cannula into my left arm so I can write and even though we both know it’s usually mission impossible, they’ll always have a go. They know how much it means to me and perhaps they’re also doing their bit to help a struggling writer.  They also tell me to drink loads and loads of water before each treatment and I certainly try to do my best but with a long car drive, I have to be careful. I can’t pull up every five minutes for a toilet stop. At the same time, I desperately want them to get that cannula in my left arm so I can write and that’s what it takes…a gallon or more of water. But I want to write. I need to write. For me, writing is breathing.

12A has become my home away from home… some kind of strange oasis, the calm at the eye of the storm. My transfusion takes about 3-4 hours and during this time, I write, read or chat with my “colleagues”. Before the kids started school, these treatment sessions provided me with much needed time out….a time of relaxation and repose. It was my “cave” and my retreat. Life was very hectic back then.

My trips to 12A are full of routine, ritual and rewards. That’s what gets me through.

The kids usually go to my parents’ place while I’m here and I set myself up with a cup of tea, a muesli biscuit and all my writing and reading material. I naturally always sit in one of the chairs facing the view and I very rarely miss out. The view is my salvation!

The Twins

When the cannula goes in, I usually focus on the two tiny little flags perched on top of the Sydney Harbour Bridge. Apparently, fixating on a point is a relaxation technique but I’d been coming here for several years before I’d found out about that. The Bridge was just there like it’s always been with its broad arms proudly spanning the Harbour. She is still stunningly beautiful after all these years so strong, majestic and omnipresent.

Usually, my husband and I have afternoon tea at Kirribilli afterwards. Nestled under the Harbour Bridge, Kirribilli has a quaint almost village feel with rambling old terrace houses, narrow, winding streets and stunning harbour views. It even has a community garden. We used to hang out at the local bookshop with its community knitting projects and tea served in real cups and saucers. It was another home away from home…an oasis after a day at the hospital. Sadly, the bookshop closed a couple of years ago but we’re also known at the Freckle Face, which is just downstairs from my dentist. The Freckle Face sells tea towels saying something along the lines of a face without freckles is like a sky without stars. My daughter has had a smattering of freckles over her nose ever since she was 3 despite smothering her face in sunscreen and staying out of the sun. Freckles are our friends. They have to be. They’re not going anywhere.

I have met an amazing cast of characters in here and it’s never been morbid or depressing. People are often amazingly upbeat, philosophical and they are going to beat whatever’s trying to beat them and they are very positive and determined. If anything, I’d say the people in here are turbo charged and very pro-active. I’ve come out of here with all sorts of good ideas and suggestions. I’ve even managed to meet a few writers. One put me onto a fabulous TED talk by Elizabeth Gilbert about the source of creativity.  http://www.youtube.com/watch?v=86x-u-tz0MA

But the seasons are changing.  This is my second last visit to 12A.

What the kids call “the brown hospital”, the ambos call “the chocolate block” and what was named the “Royal” North Shore Hospital when it really was the 8th wonder of the ancient world, is closing down and going to be demolished. Detonated. Kaboom! The much-anticipated new, almost space-aged hospital is almost ready for sickness.

It’s terminal….the Chocolate Block as viewed from neighbouring Gore Hill Cemetery.

Many would argue that the Chocolate Block is well and truly passed her use-by-date. An imposing brown-brick box stuck on top of Gore Hill, she’s not exactly beautiful. To be honest, she’s on the ugly side of “eyesore”. I’ve also heard on the hospital grapevine that she’s riddled with concrete cancer and might even fall down before D-day. I don’t know about that but the lifts certainly have “issues”. They take so long to turn up that I can’t help wondering whether they’re daydreaming, stuck between floors, or having some kind of midlife crisis.

Being stuck in hospital isn’t that much fun either and there have certainly been times as an “inmate”, where I could have blown the hospital up myself! I wouldn’t have needed dynamite either. I was pure explosive!

That was five long years ago now but I haven’t forgotten. I can still hear my then 3 ½ year old son stammering: “Mummy better? Mummy better?” He was all innocence. He didn’t know what he was asking.  I don’t even think I gave him an answer. We didn’t have a lot of answers back then. With his big, brown eyes and golden curls, he was way too young to deal with all of that but it’s not as though we had a choice. It was just the way it was but fortunately, we survived!

After going through all of that, it’s hard to understand how I’ve developed this strange sense of attachment now that the Chocolate Block is about to expire. I wouldn’t call it “love” but there’s a very definite fondness. Fate has seemingly forced us into something approximating friendship and I don’t really want to let it go. I want to hold on. There are so many, many memories and even though most of them are pretty bad, they are still part of our story… who we are and where we’ve been. That means something to me even though the place is slowly falling down, rumbling and decaying.

You see, a hospital isn’t just a place of disease and despair. It’s a place of healing…a place of hope where relative strangers reach out and care for your most personal, most desperate needs and love and care for you. They take you into their hands and sometimes into their hearts. After coming here for so long, I am no longer among strangers. This is my extended family… my friends. We care. We reach out of our little cubicles and touch one another. At least, we try!

I know it sounds strange “enjoying” having medical treatment… having a needle stuck in my arm for a couple of hours when I could be outside somewhere in the real world and doing real world things. I could be at the beach but I was there yesterday. I walked through the sand and felt the waves freeze my toes. The kids, who always seem to be so immune to the cold, were jumping over and under the waves and splashing each other with water and building canals through the sand. The sun was glorious just as spring sunshine always is after a cold winter. It’s a wake-up call. Time to shed your winter skin and squeeze and shove all your whale blubber into some sort of swimming attire and dive into the waves.

I could be at the beach but I’m here and I have no regrets or disappointment. We all need time to stop. Pause. Contemplate. You can’t just go, go, go, go, go. You need to be still for a bit just let all the busyness of life recede like a wave and just be. This is enforced stopping coming in here although I don’t really stop because I always write but this writing is usually more reflective. I often think about what’s transpired since my last visit. What’s coming up. I also have a few regulars I meet up with too. I’ve lost track of my favourite at the moment an older lady who would shoot me for calling her elderly because she is a young woman displaced in an older body. That’s all. Just like I still consider myself 25 despite appearances to the contrary.

The bloke across from me doesn’t quite see it like this right now. He tells me being sick is a full-time job. I know what he means.  I’m down here three days in a row this week myself but that is exceptional. I have appointments with the rheumatologist, my transfusion, breathing tests, the lung specialist and the gastro registrar. That’s three different specialties in three days. I can get rather miserable too but I have to guard myself from that. Protect myself from the undertow. Before you know it, it can snatch hold of you and drag you under and it’s very hard to find your way back up to the surface! You could very easily drown!

The Chocolate Block may not be a perfect world but it’s been there for me through thick and thin. I’ve had my team of doctors, nurses, chaplains, physios, OTs, social workers, food service, cleaners and the beautiful Pink Ladies and everyone behind the scenes who somehow manage to keep this hospital operational. Collectively, they’ve not only saved my life but have also given me quality of life. They have given my husband a wife, my kids their mum and my parents still have their daughter. That is priceless!

I know the new hospital is going to be brand new, bigger, better but I’m losing my room with a view and it feels like I’ll be having my treatments in some kind of cupboard. After four years of staring at those little Australian flags perched on top of the Sydney Harbour Bridge, I’ll be staring at a blank wall and it won’t be the same. It won’t be the same at all. The chemo patients and their nurses will all be moving to the Cancer Centre and I’m off somewhere else. I don’t even know where I’m going but I’m pretty sure that most of the nurses who have been treating me for the last four years, won’t be there. They’ll be gone. They know my veins like the backs of their own hands and as I said, they’ve always tried to get the cannula into my left arm so I can write. It is such a small detail in the overall scheme of things but it’s meant the world to me. The nurses have been my rock throughout this tremendous storm and I have been the limpet. I have clung to them as the waves and the wind smashed into me on every side.  But now the rock has gone and I’m slipping into free fall drifting, drifting. I have never seen a limpet drift. They’re clingy…always glued to the rock and nothing will pry them off. All I’ve ever found is the empty shell.

It’s not just the nurses I’ll miss. We are a community. We might be a motley crew battling a myriad of things like cancer, auto-immune disease, blood disorders but we’re a community. It’s a place where we all come to find healing, understanding and we’ve also found that great Australian tradition… mateship. A mate is someone we fight for. We don’t just throw them overboard. Not that I’ve been thrown overboard. I still have one more treatment to go and I can’t complain too much. After all, they have built me an entirely new hospital!

Some people are never satisfied!

I know I’m being a capital letter Drama Queen…the dying swan. But I don’t care. Right now, I don’t feel like moving forward.  I feel like going backwards, wrapping myself up in my dooner and sleeping through. It makes a fabulous cocoon.  I’m only human. I’ve had enough of stormy seas! I just want to sleep!

But…But…But…

The way forward or the way back? Scenes at the Chocolate Block.

Even this control freak of control freaks has to concede that things are moving on. There is nothing, nothing at all I can do to stop or change any of it. The hospital juggernaut is just too big and clinging to the past will only make me sick. It’s certainly not worth dying for! Given the volatile nature of this auto-immune disease, I really have to pick my battles very, very carefully!

Besides, is a hospital really something I want to cling onto? Wouldn’t this little limpet be so much better off perched on a rock somewhere down at Kirribilli instead? The hospital doesn’t have a monopoly on harbour views. The Sydney Harbour Bridge isn’t going anywhere. It will always be there smiling, strong and resilient… just like me. After all, I’m a survivor!

xx Rowena

PS:  It’s taken me almost a week to work on this post and I’ve been going through some difficult emotions. While being sick can feel like a full-time job and I’ve spent 3 days at the Chocolate Block this week, it’s not my world and it really is just a very small part of it. It’s just that sometimes hospital looms larger than it should both in positive and negative ways and perhaps it’s time to shrink it down a bit.

I’ve actually done quite a range of things this week. I stayed at a friend’s place in Sydney on Monday night. Tuesday, I met up with Mum and the kids after my appointments and we saw The Lion, the Witch and the Wardrobe at Marion Street Theatre. I also had my first violin rehearsal this week and met a whole new group of people. We made music together and laughed as we made mistakes and laughed as we improved. Today, I took my kids to see their dance teacher star in Peter and the Wolf and we arrived home to see the Sydney Swans, our Aussie Rules Football team, win the Grand Final by a nail biting 10 points. The game was so close I could barely stand to watch those last few minutes.

We live in such a diverse and eclectic world and somehow we need to cross the bridge and embrace change, instead of being afraid or turning back. I find that particularly difficult but as the inspirational Helen Keller once encouraged:

Life is either a daring adventure or nothing. Security does not exist in nature, nor do the children of men as a whole experience it. Avoiding danger is no safer in the long run than exposure.

Another challenge awaits!

The Love of a Stranger

You can make fun of Cupid with his bow and arrows but sometimes love does just strike out of the blue and Cupid makes as much sense as anything else.

In this instance, I’m not referring to romantic love. Rather, I’m talking about the love of a stranger…someone you have never met before. Someone you don’t know from a bar of soap. Yet, for some strange reason they have loved you or you have loved them and really, genuinely cared.

I am not going to quote those who have gone before me and come up with all sorts of elaborate definitions of love. As much as I usually love classifying and defining things with Darwinian precision, right now I’m feeling that love needs to be free and unfettered. Let out of its cage and not put back into any kind of “box”.

That’s because the love of a stranger doesn’t make sense. We expect even demand love and its implicit attention and understanding from our close family and friends and conversely expect the reverse of a stranger. However, sometimes a stranger “gets us” in a way that our nearest and dearest do not and we make a connection that is very much “outside the square” or outside our inner circle and we are almost bamboozled when it happens.

Why is it so?

I am a very extroverted person and it is quite usual for me to chat to strangers. As much as I need to be alone to write, paint and create, I’m usually chatting to somebody in my head while I’m doing these things so I’m not really so alone after all. People are the centre of my universe. I don’t always love them but they intrigue and fascinate me. I try to nut them out. I know there are no definitive answers but life is also about the journey.

So it’s not surprising that I am quite familiar with the love of a stranger. I’ve had quite a few of these experiences and can no longer just write them off as “chance”.  They were meant to be. There had to be a reason!

Every now and then, someone comes into my heart. Sometimes, I know them. Sometimes, I don’t. That person comes into my heart and I care about them in a way that really defies explanation. While this might seem like a fabulous thing, it can actually be quite awkward as well and I can find myself trying to pull back my emotions like reigning in a wild horse. I care so much but how can I possibly convey that love to a stranger without intruding or looking like some kind of fruitcake?

I end up doing what a lot of people probably do with this very, very special love. I keep it to myself. Hide my love away. I might write poems, which never get read and some of them have been quite beautiful. I’m not talking about my writing style here but the vision that I’ve had of that person and I really would like to somehow step across that divide….that gap that exists between strangers…and connect. Surely, this is why this person has been put in my heart in the first place? There has to be some point to it all!

So while there is so much beauty in the love of a stranger, there can also be this sense of overwhelming distance, inhibition and frustration and it can all just get too difficult in the end…another mission impossible!

I recently experienced the love of a stranger myself in a very powerful and life changing way.

Last October, I found out I had mild Institial Lung Disease, a known complication from my auto-immune disease. This news was absolutely devastating. This disease can be quite dormant or it can go out of control like wild fire and basically take you out very quickly. My kids were only 7 and 5 at the time and my daughter still pretty much clung to my leg. The thought of them losing their mum was extremely intense. You can just imagine the kind of very dark place I was in at the time. I should, of course, mention the upside is that this lung disease can be quite dormant and there is treatment available but that treatment can get very toxic. I’ve known all of this for five years so it wasn’t a surprise but once my nemesis had finally arrived, I still felt shattered (so far I am in the dormant category which has been fabulous news!)

After getting this news, I wandered into the hospital volunteer shop. Our volunteers are called the Pink Ladies and they have a stall selling second hand books, toys and all those hand-knitted items you find in hospital shops.

I can’t even remember what I was buying but as I was paying, I burst into tears. I am not the bursting into tears in public kind of person. Most of us do like to think of ourselves as somewhat stoic, even when we’ve just been given dreadful news.

Well, one of the pink ladies takes my hand and smiles at me and I’m pretty sure she even told me I would be alright. Usually, when someone tells me I’m going to be all right in the middle of a crisis, I’m rather rebellious and my inner cynic growls and snaps away like a rabid dog. “What would you know?” Growl! Growl! Growl! But this time it was very, very different. As she held my hand, I felt the most amazingly intense sense of love almost like a white light. I felt such warmth, comfort and strangely in the midst of all this heartache, I felt a sense of peace.

I had been touched by a stranger.

As much as I am loved by my husband, my kids, my family and friends, this was different.  I really believed I’d been touched by God. That God reached out to me through the love of a stranger. Perhaps for some people, that might make perfect logical sense but for me, it was still a very steep learning curve. You see, I’ve had a few chats with God about why I have this disease and not all of them have been particularly pretty.

As I’ve thought about this recently, I have also wondered how or even if this experience affected the pink lady at all. Was she conscious of feeling this great love for me at the time or was she just some kind of vessel…that God just moved through her without her even being aware of it at all? I would like to find out. I am always curious.

Yet, despite all my frequent hospital visits, to the best of my knowledge, I’ve never seen this pink lady again. Funny that!

As wonderful and life changing as it was for me to experience being loved by a stranger, it can be quite a different thing to love a stranger yourself. How are you supposed to express that love and very deep sense of concern about this person you don’t even know or might know a little bit but not enough “to intrude”?

Recently, I found myself in quite an awkward situation. One of my doctors became quite ill and the whole thing was kept very quiet. That’s understandable. Every patient is entitled to their privacy and as a doctor, your privacy is probably something you have to fight pretty hard to preserve. I get that. At the same time, my doctor had saved my life and so it was only natural that I would, at the very least, care about him. But there is a real line in the sand between doctors and patients.  Even though he knew all about me, I knew almost nothing about him at all. He was as good as a stranger. I saw him in shared rooms in the hospital clinic where there was nothing even remotely personal so I hadn’t even seen a family photo…nothing. But as my doctor became a patient himself, I was subconsciously barracking for him like all of Australia calling out: “Aussie! Aussie! Aussie! Oi! Oi! Oi! at the Olympics. I really, really wanted him to win. Not for me but for his family. Sadly, I couldn’t tell him any of this although I did send him a couple of cards. As much as you care, you also need to respect other people’s space, their privacy and their need to deal with their issues in their own way. Not everyone blogs their innermost thoughts onto the Internet hoping to attract as many readers as possible. Most of my closest friends and family are ironically extremely private people.

Unfortunately, my doctor passed away. Again, I was deeply saddened but not for myself. I felt a very strong connection to his wife for some reason. A woman I didn’t know existed before the notice appeared in the paper. She was really on my mind. I don’t know why. Certainly, some of my mother’s friends are starting to lose their husbands and Mum has shared some of their struggles with me…what it is like to lose your soul mate, your partner. Perhaps, that was it.

Anyway, I wrote his wife a card and delivered that while I was still working on my letter. I wanted to give his family a few anecdotes about him from a patient’s perspective. When my grandmother passed away, we received some extraordinary letters and insights and they were such treasures…diamonds! I have this sense that when you lose someone you love, you want to hold onto as much of them as possible and every little story and anecdote is precious.

But I guess this writing process intensified my sense of connection and soon I was doing my usual thing of walking round in someone else’s shoes and experiencing grief that wasn’t mine. Fortunately, I went away for a week and that helped break that connection, which was a good thing. Feeling so intensely for a stranger who I wouldn’t see and couldn’t connect with, wasn’t helping anyone. Moreover, there are so many people closer to home, especially my husband and kids, who really needed me back.

Thinking things through, love in action is probably the best way of conveying your love for a stranger. When someone is going through hard times, you can cook them a meal, pick up their kids or make a donatation. These are socially acceptable avenues, safe ways of expressing your love, respect and concern for a stranger. People are understandably wary when strangers turn up on their doorstep unannounced.

One of the greatest stories about the love of a stranger in action, involves rescuing the survivors of the Titanic. I came across this story around the time that my doctor passed away and it showed me that loving and caring for a stranger, particular someone who is hurting, isn’t such a strange thing after all. It is part of being human and being more than just a cold and calculating machine!

When Carpathia received the distress signal from the sinking Titanic, she was 51 miles and close to 4 hours away. Instead of thinking “it’s not my problem” and ignoring the situation, Captain Rostrum, the crew and the passengers all rallied together and pushed themselves and that ship well beyond its limits to come to the aid of total strangers. Of course, Carpathia was travelling through the very same icy waters which had sunk Titanic and was also at high risk of a collision with an iceberg herself. She wasn’t exactly the latest and greatest ship either and as Captain Rostrum exceeded her maximum speeds, there was every possibility that her boilers could blow. The heaters were turned off to conserve power and everything went into getting that boat there as fast as possible. The cooks were ordered to make soup and passengers gave up their cabins for the survivors and even gave them some of their clothes. You didn’t hear anybody cry: “Oh the Titanic sank and ruined my holiday!”

That was the love of a stranger.

More recently, in January 2011, we had the Brisbane Floods.   I was staying near Byron Bay in Northern NSW at the time and we experienced similar weather conditions. It felt like the entire Pacific Ocean was somehow falling from the sky and it rained and rained and rained for days on end. All of this rain didn’t go down well in Brisbane, which I found out has been built on a glorified flood plain. I have been on picnics beside the Brisbane River where she looked so calm and still but she was really just a sleeping giant. With all this rain, the Brisbane River burst its banks spewing mud and guts everywhere. There was mass devastation.

Almost immediately, huge bands of volunteers mobilised, bringing along their own mops, buckets, gum boots and even cleaning products. They went into strangers’ homes and cleaned up the mess. You could just imagine the mess too. What it was like to clean up all that filthy, stinky river mud. It’s the sort of thing nobody wants to deal with and certainly not a job any sensible person would go chasing and yet they did. I even heard of a stranger clearing a dead cow out of a complete stranger’s  home in Ipswich. If that isn’t true love, I don’t know what is.

I’ve written a lot here about the love of a stranger in difficult or tragic circumstances but I also wanted to share another situation which means a lot to me.

Last year, when I went down to the Sydney Writer’s Festival, I attempted to buy some new clothes. That might sound simple enough but I couldn’t find anything which fit and had such a dreadfully demoralising shopping experience. I had been alternating between two identical pairs of jeans just to keep myself covered up and was really desperate for some new clothes.  Since I’ve been on prednisone, I have put on weight and it’s been very hard to find anything which fit let alone reflected my personality or character at all. I came back from Sydney feeling so defeated. I’d given up on clothes shopping for life!!

A few days later, however, I was going to my local fruit shop with the kids when I noticed the most extraordinary scarf in a shop window nearby. This scarf literally pulled me in off the street and I was mesmerised. I had to have it. Now, this is the great thing about scarves because they really are one size fits all. they can reflect your personal style and also camouflage a few sins.

The next day, I went back into the shop and instead of the usual neglect, I was suddenly treated like a movie star and my new found “friend” took me through such a range of clothes and looks that I’d never ever considered before and really pampered me. She spent time with me introducing me to a weird contraption called the shrug, a cape and I think I bought a black top and a knitted jacket.  More than just buying clothes, she helped me feel validated, worthwhile and special. She was so positive and as we chatted, we found out we had a lot in common. Slowly but surely, my “muse” as I’ll call her has encouraged me, listened and become such a lifesaving friend. I go into the shop which I’ll call “The Sanctuary” and I now have “my chair” and I sit out the back and we chat about so many personal and precious things. I am not the only person who visits the muse either. There is a little following, which is what happens when you love people. People gravitate towards you. They want to be with you…a part of you even.

(Just a small digression here…I have subsequently lost 10 kilos!!)

Even though I still feel somewhat awkward about loving and caring for strangers, I am realising that it’s not so weird after all. Loving a stranger is actually quite beautiful and often very altruistic involving much more give than take. But it can take a bit of courage and a willingness to step out of your comfort zone to take that risk. While it can be difficult to know quite how to share our love with a stranger, somehow we need to persevere instead of doing what I’ve been doing and hiding my love away, keeping it secret. Love isn’t something you want to keep trapped in a bottle or some kind of bug catcher. Love needs to free… as free as a butterfly in flight!

When you rotate “Understanding” 45 degrees, you get a butterfly. Just an interesting thought. It’s amazing what you discover when you doodle.

Butterfly in a Love Bubble…Two hearts that beat as one.

Butterfly in a Love Bubble…two hearts that beat as one.

So on that note, it’s time for me to leave my inner labyrinth and go with the flow…love’s flow instead of being so ridiculously inhibited. I have sent off one of my poems this week and I’m going to finish off that letter to my doctor’s wife. My doctor’s obituary recently appeared in the paper and it was very warm and intimate, providing me I guess with a bridge of some sort…some way of reaching across the great divide.

I just had this thought…

If we could only paint the world with love, perhaps the Earth could even glow like the sun…and not through global warming either!

What are we waiting for?

I’ll race you…

On your marks! Get set! Go!

Last one there’s a rotten egg!

When the ordinary becomes extraordinary…

Last weekend, we had the privilege of catching up with a very close friend for dinner. Now, surely that isn’t something blogworthy? It’s possibly not even worth mentioning on Facebook. It’s like issuing a press release announcing: “I had a Vegemite sandwich for lunch”…blah, blah, blah, blah.

Well, I disagree. It’s been a good five years since we last went out for dinner with Emma. That’s not because we’ve been slack, lazy or had “good intentions”.

Sometimes, just getting out to dinner takes military planning. My friend has two young kids with special needs and she had escaped for the weekend “on respite”. That’s what it takes to have dinner with Emma. Things at our end weren’t that much easier. My auto-immune disease has flared. My prednisone has gone up and if things don’t turn around soon, my specialist is talking hospital. The pathology lab has also rung us twice lately concerned that I’m about to have a heart attack. After one stressed trip to Emergency, we are attributing those results to the auto-immune disease which seems hell bent on getting more attention. It’s wanting star billing and wasn’t happy just appearing at the bottom of the trailer. This means I’m not really about to have a heart attack. It just looks that way…I hope!

Considering how little we see Emma, I shouldn’t have felt guilty about going out but for a moment, I did. As much as I believe in seizing the moment, I still hesitated. Our kids had just come back from Camp Breakaway and I felt pretty bad about going out and leaving them behind. I also wondered whether I should be “resting” instead of going out. Actually, I knew I should probably be at home taking things easy but I wasn’t going to do it. I really wanted to see Emma and have a fabulous night out and celebrate. Emma has a very special place in our hearts. She introduced the two of us and our world might have been very different without her.

You can also see from the photos just how close Emma and I are. We are even wearing matching outfits and as I said, we don’t get together often but it almost always happens. I will point out that I gave her the owl necklace for her birthday so that matching bit was intentional.

So you see our dinner was really rather extraordinary. The fact that the three of us could sit in a restaurant and just talk was truly amazing!!

Not a care in the world!

Emma and I met up again for coffee on the Sunday and were joined by my daughter. Having coffee with your daughter is something so many people take for granted but with my health situation, I don’t. I haven’t seen Emma’s kids for a long time but I gather that going out for coffee isn’t possible at this point in time. They do lots of things together and Emma is an awesome Mum. She loves her kids to the very depth of her heart and fights tooth and nail to help them reach their potential just like any other parent. However, most of us don’t have to lobby, campaign and fill out 500 forms to pull that off!

I had the feeling that Emma and I both wanted to stretch the day out as long as we possibly could. We were just around the corner from the beach and I suggested that we pop down for a last look before we left. I wasn’t sure whether she would go. She was already on borrowed time but she did.

Ordinary…Extraordinary.

Again, it was a very ordinary thing for the three of us to go to the beach. No one looking at us would have had any idea just how amazing it was for us to be there. Emma made a few remarks about the extraordinariness of a little girl walking along the beach collecting shells with her Mum. I had my camera with me and I was photographing Miss doing cartwheels in the sand in her petit skirt. She was so pretty. I watched her looking at her hand and footprints in the sand as she cartwheeled down the beach. She also collected star shells and little bits of bright pink coral. Emma showed Miss the crab bubbles in the sand as the waves receded and I couldn’t help wondering why life had to be so complicated. Why should going to the beach with your Mum be such a privilege and why do so many people just take it all for granted? I know I don’t.

Cartwheels in the sand.

Footprints.

I was also having my own thoughts quite grateful that Emma knows me. Knows the real me that I’ve always been long before I had kids and she could share “me” with my kids if required. I know that all sounds a bit intense but nobody knows the future and that’s what makes the present so, so precious. I’m not talking about being morbid. It is just a reminder to seize the day, seize the moment and squeeze out every last drop. You don’t know what tomorrow will bring.

My daughter took this photo of me and you can really see the connection between us. Mummy playing up for the camera.

That said, even I don’t do it.

I really wanted to raise these issues in light of a recent blog I read by Stella Young on Mamamia. Stella Young is a disability activist, comedian, knitter and the Editor of Ramp Up, the ABC’s online space for news, opinion and discussion of disability issues. I recommend reading her post at

http://www.mamamia.com.au/health-wellbeing/stella-young-says-were-not-here-for-your-inspiration/

I liked some of her comments but I really believe we should be doing more to encourage others- not less. So what if we are celebrating the mundane, the everyday? For some of us, it really is extraordinary, inspirational…especially for people living with “invisibilities”. Just think about people living with anxiety, for example, who might be too afraid to leave their home. They need some inspiration!! If you can do it, I can do it. Seeing is believing. Moreover, I’d much rather have Stella as a role model than so many trashy celebrities.

I have people tell me I inspire them and I am so grateful because they look beyond my messy house, my parenting imperfections and they see what I do well. They understand that I face some hidden obstacles yet still manage to live life to the full. I say bring it on!!! We need so much more of that and so do our kids!

Thinking about seizing the moment and being inspired, I’ll just finish this off with this last little postscript because this week Miss was really inspired and I am so grateful.

Miss had had a term of violin lessons and gave up after too much screeching. Understandable perhaps but disappointing because I’d seen how much she’d loved it, connected with her violin and I thought she’d regret it. I just didn’t know how to ease her over those initial speed humps of learning a new instrument. I have practiced the violin almost daily and persevered myself to be an example to her but it wasn’t working. I have also been attending her violin lessons and keeping her spot warm. We had also tried switching her over to piano but she was still reluctant and getting very, very naughty in lessons until I decided to go it alone. It was all too hard and I was really loving my violin lessons with my beautiful teacher!

Well this week, Miss performed in Central Coast Showcase with the school choir and heard a young girl who was totally sensational playing her violin. She came home completely unprompted and said: “Mummy, I want to play my violin again.” I was so excited. Of course, I saw this as turning the corner…a new beginning. I’m not a cynic and sometimes it pays not to be because today she practiced. She was the one asking for her violin and we went through the pieces together. She actually played quite well and there weren’t that many squeaks after all.

That’s what inspiration can do! Bring it on

Three Magic Wishes…

Photo: the Chocolate Block. That’s what the amboes (ambulance drivers) call Royal North Shore Hospital.

This week my three magic wishes were actually granted…

  1. Alone.
  2. Doing nothing.
  3. Asleep.

This should have been amazing…a real Eureka moment…but it wasn’t.

You see, I didn’t just find some old genie bottle washed up on the beach and rub away. I had to go into hospital to receive my three magic wishes.

I was on the gastro ward at Royal North Shore Hospital, Sydney having a camera shoved down my throat to photograph my stomach and everything in between.

That was how I ended up alone with nothing to do and plenty of rest.

Was it worth it? There are easier ways to get a break…grandparents, vacation care, play dates. The list goes on. Did I really have to go through all of that?

Believe me, next time I’ll take up one of those other alternatives instead.

I only had the procedure because I didn’t think they’d find anything…at least, nothing new! It was all supposed to be routine and if I’d thought they were going to find anything more than last night’s pizza, I never would have agreed to the procedure. Ignorance is bliss.

I don’t know whose brilliant idea it was to actually look in there in the first place. Surely, it wasn’t mine? No, definitely not!  I was just the passenger going along for the ride. I’m not driving this thing. Actually, I’m not sure who or what is in the driver’s seat but that’s another story…

Also, I have to admit that being alone was over-rated too! I suddenly felt so incredibly alone when my husband had to leave. I didn’t know how long I was going to be just lying on the bed waiting but I’m not very good at sitting, or even lying still. Perhaps, he could have stayed a bit longer but I felt like such a baby wanting to hold his hand. This procedure was nothing. I’ve had it done before and all I remember is having a very deep and relaxing sleep.

The procedure itself wasn’t the problem. It was all the other stuff. Just wearing the white hospital gown was freaking me out. I was Cinderella unravelling all the way home from the ball as I madly struggled to hold all the bits together. You know what those hospital gowns are like and I really didn’t want my undies smiling out the back. It’s not a good look!

It’s bad enough that the gown is white but the bed and the sheets and everything to do with the place are white as well. There is something quite ghostly and chilling about being around white on white on white even if I can’t smell antiseptic. I am now lying in all this white with a doobywacker attached to my finger which tells me whether I’m alive (beep, beep, beep) or dead. The nurses did warn me not to panic if the machine alarms. More than likely, I won’t be dead. Apparently, these doobywackers have a nasty habit of falling off. That’s good to know. I’d hate to have a heart attack because I’m dead but not dead!

I’m now starting to wonder whether hospital humour really is quite so funny after all.

Anyway, the nurses were just beautiful and so understanding as I talked more and more and more…an anxious mess. Against the odds, they actually helped me to relax.

As I mentioned before, I’m not good at sitting still, lying still or doing nothing. Geoff has my phone so I can’t phone a friend, surf the net or check out Facebook. However, I did manage to keep hold of a book and a pen. I start blogging in the back of my book. You know those couple of pages they leave blank. They’re like the back of a business card. They’re meant to be written on. You could even start writing your own novel in there. Well, after filling up the back of the book and then filling up whatever blank space was in the front, I decided I’d better actually use the book for its intended purpose. I’d deliberately brought along a distracting book written by some goofy safari guide. I mean, Africa is such a long, long way away from Royal North Shore Hospital and I really was doing my utmost best to take my mind off of things. Usually, I’d be reading something really D & M, philosophical or by another survivor when I’m going through something like this. However, lately I’ve resorted to humour and distraction instead. The author is a safari guide in training and the book is filled with funny stories. Under normal circumstances, I’d be laughing my head off but right now, I’m really struggling to focus. You know where you find yourself reading and re-reading the same words over and over again and you get stuck on the same line of text but you can somehow convince yourself that you are actually reading. Even though you really haven’t digested what you’re supposedly reading, you still turn the page just to convince yourself that everything is okay when clearly it’s not.  Well, that’s what this was like. I just couldn’t switch off from where I really was and pretend that I was on a safari in deepest, darkest Africa.

An eternity later, the doctor appears. A device goes inside my mouth to keep it open and a cannula goes into my hand. It won’t be long now. I’m looking forward to slipping into a deep, relaxing sleep. I’m out to it.

It’s all over. I slowly wake up and the nurse gives me a sandwich and a cup of tea. There are about 6 patients all lined up to get our reports. I’m quite blasé the report because I already know what is going to say…heartburn, hernia. There’s nothing at all to worry about.

Ha! I should have known better. Every routine test I’ve had lately has brought fresh disasters. I am told I have a nodule. I don’t know what a nodule is but there’s a colour photo of it on the report. I’m usually hungry for information and love a photo but this is different. I’ve taken a few lessons in avoidance and denial lately and I just don’t want to know.  But I am weak willed. I have to look and I’m now staring almost through it. The report says that it’s tiny…only 6 mm but it looks more like a mountain to me. It’s nasty…very nasty and if it isn’t terminal, it’s definitely radioactive or worse. Sure, I know they’ve zoomed in and made it look a thousand times worse than it is but I can’t get that image out of my head. This thing is a mountain…an Everest-sized mountain and I’m not going to climb it.

The doctor, however, seems quite relaxed. He’s taken a biopsy and I’m to follow it up in the clinic.

Geoff is also quite relaxed about the results. He’s my rock.

I’m still unconvinced. The report tells me that they will contact me within 7 days if it’s nasty and I wonder how they will reach me if I forget to charge my phone.

You would think that this would be enough drama for one day but now I am waiting for the rheumatology registrar. We live more than an hour’s drive away from the hospital and so as much as I can, I try to multi-task. That means squeezing as many appointments as I can into one day. The registrar arrives with my Professor in tow. There is no guess work involved here. I already know I’ve had a flare. As much as I might be in denial and thinking a mild flare isn’t an emergency, it is starting to look like the makings of an emergency. My prednisone has been jacked up to25mg and I’ve been put on weekly blood tests. As bad as 25mg of prednisone sounds and take it from me 25 mg of prednisone is going to do its very best to turn me into a Michelin woman with a very bad temper, it could be worse. If this doesn’t work, I’m looking at 50mg of prednisone and a trip to hospital was also mentioned. So unfortunately, this time I am not over-reacting or being some kind of hypochondriac. This is what it is.

I know it’s going to take a lot of positive motivational talk to get me through the next couple of weeks. I have been through this before and they have managed to get my auto-immune disease under control and reduce the prednisone to manageable levels. This is temporary. It isn’t forever. I can get through this. I can do it. The sun will rise. Stay tuned.

Sunrise    Jindabyne 2012

As luck would have it, I had booked the kids in for a Siblings and Young Carers Camp at Camp Breakaway  and we dropped them off yesterday morning. It was perfect timing and exactly what we all needed. I marvel at the timing of it all. When I had booked the kids in for camp, I was quite fine and had wondered whether they really needed to go. Our kids are only 8 and 6 and haven’t even been for a sleep over with a friend yet. It was quite a big deal to ship them off with strangers but I had actually met the General Manager at nippers and she was so lovely…so compassionate. I took a deep breath and I went with it. By the time the camp had come around, I was off having tests in hospital and my auto-immune disease had flared and we all really needed it.

I was super impressed by how much trouble the team at Camp Breakaway had gone to create a fun, party atmosphere for the kids. The theme is Under the Sea and they had made a mermaid and merman and you even walked through a decorative shark’s jaw when you arrived. I could literally feel the love in the air and I was so pleased my kids were going to be a part of that. It was a really happy place. Our kids were so entranced, they barely said good bye. That was something for our 6 year old daughter. She struggles to let go of my hand when I say goodnight so that was a very positive sign. I’m so relieved the kids have the opportunity to get away from all of this and just be kids for a bit. Have fun. Enjoy themselves without constantly running into shadows.

I also have the chance to rest and recuperate a bit. That said, I am also thinking about the kids and wondering what they’re up to. I wouldn’t even mind a phone call but I have to be strong. Let them go. They will be home soon enough.

I know it’s rather heavy writing about this sort of thing. People don’t usually talk very much about life, death and everything in between. I don’t usually talk about it either. As you can see from my previous blogs, we lead a pretty active life and we’ve been up to all sorts of fun activities during the holidays. However, we also live with a shadow just like so many other people live with all sorts of shadows. Things aren’t always easy but they’re not always hard either and we enjoy life. I try to squeeze the last drop out of every day and yes, quite often I over do it but what is the point of living if you do not live?

I’d love to hear your thoughts on living with adversity. How do you get through?

Camp Breakaway can be found at http://www.breakaway.org.au/