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!

9 thoughts on “A Million Dollar View…My Journey Through Ambulatory Care.

  1. amphomma

    So many emotions, and while I haven’t had your particular experience, I felt as though I could understand the bitter sweetness of moving on from that building. There are places in my life where I’ve experienced heartache, but those were also the times when I felt the presence of God most clearly and I grew in my faith and perception of life the most. From another viewpoint, I can imagine how my husband has gotten unique attachments to hospitals in which he’s worked: 80+ hours a week for five years as a resident, where he learned to help patients surgically, medically, emotionally…where he was an attending physician for the first time two years ago…it is bittersweet indeed.

    I pray for health, strength, and more beautiful posts like this one that bless others as you sort through your own feelings.

  2. roweeee Post author

    Thank you so much for your comment. It’s lovely to hear from you again. Hospitals are strange places and most people don’t spend much time in them at all and don’t develop the sort of complex emotions you have as a doctor or long term patient.
    I felt like such a weirdo photographing the corridoor with the arrows on the floor but a few passers by understood and I think share my weird sense of affection.
    I also found this corridoor amusing as I’ve been thinking a lot about my path lately and especially in light of reading Proverbs and it was then almost comical to see a path with arrows on it…”this way”. Don’t need to think about it LOL.

  3. roweeee Post author

    Hi Mandy, thank you very much for your beautiful comments!! It has been a gu=ift but I’ve also worked hard to develop that further. I write all the time. I love it!
    It was great to meet you today. Very serendipitous if that is a word. My mother always says things are “meant to be”.

  4. Mandy

    You are an inspiration – for sure. In order for me to write I need to read – like you said today – guess what – I want to read your books! I so love the way you write from the heart.

  5. roweeee Post author

    Hi Mandy,
    It looks like you might be the wind beneath my wings! I’ll have to get more of this material finished. I’ll have to dig up some of the material I wrote at Whale Beach, which seems like an eternity ago now.
    A book book to get into is “The Prophet” by Kahlil Gibran. It’s awesome. It’s a book of life lessons and very inspirational. The language is very poetic and just beautiful. I only came across it last year and I couldn’t believe it took me 42 years to find it…especially given my love of poetry!! However, I found out that Mum’s sister wrote a passage from Gibran in a card to my mother when I was born about how we don’t own our children. I really loved that connection!
    xx Ro

  6. Pingback: The Rainbow Hospital « beyondtheflow

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