Tag Archives: institial lung disease

Hospital Cheer…Thursday Doors.

Welcome to Another Thursday Doors.

This week’s Featured Door is attached to the Respiratory Investigation Unit at Royal North Shore Hospital, Sydney.

When you think about having a Merry Christmas, the last place you want to end up, aside from the local morgue is in hospital. That also applies to the weeks leading up to Christmas where it seems like the rest of the world is floating in bubbly and doing the Christmas party circuit, while you’re shuffling from appointment to appointment. That’s not all bad if it’s all routine, good news and you can wipe all that off your radar.

However, it doesn’t always work out that way. Six years ago, after my auto-immune disease flared up again and was resisting conventional treatment, I found out that they were bringing out the big guns and I was having chemo for Christmas. Yet, while this might seem like the worse Christmas present EVER, we actually viewed it as a blessing, a heaven-sent answer to prayer, and not a curse. They could do something.

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I wasn’t intending to revisit this journey today for Thursday Doors. Although I had lung function tests followed by an appointment with my lung specialist, I was intending to focus on my apres-appointment trip into the city (Sydney) where I photographed oodles of intriguing, eye-catching and even historic doors.

However, before I sorted them out, I wanted to acknowledge the efforts hospital staff have made to brighten up the place, trying to lift your spirits through what are often very traumatic, bleak and desperate times. News you don’t want at any time of year, but especially not at Christmas. Bad things aren’t allowed to happen over Christmas. That should be written into the fine print. Moreover, you wouldn’t be the first person to try to sue God either. Do you remember Billy Connolly in The Man Who Sued God?

Anyway, when I turned up for my lung function tests today, they’d decorated the doors for Christmas and clearly I had to take a photo for Thursday Doors.

I still remember when I walk out of those doors when I was first diagnosed with the fibrosis, and was absolutely distraught. My kids were only seven and five at the time and obviously needed their Mum. I felt bad if I was even five or ten minutes late to pick them up from school, and it was incomprehensible that I wouldn’t be there to pick them up at all. I left the lab with a single tissue and ended up in the hospital chapel sobbing my heart out, and there wasn’t a single tissue in the place. As hard as that tissue tried to cope with the deluge, it was overwrought. I ended up having to sneak back into the hospital toilets, get myself together and buy some tissues. I distinctly remember saying I had hay fever. What a duffer. A year or so later, when things deteriorated, I burst into tears in the hospital shop and the pink ladies rallied around me with such love. They were beautiful.

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Christmas Decorations in the Northern Cancer Centre. I think they’re Santa Kangaroos.

Anyway, as I mentioned, my specialists decided to treat the flare up using a chemotherapy drug called cyclophosphamide, which then introduced me to the Northern Cancer Centre on level 1 for my treatments. While I was there, I found out they had a resource centre and I came across a series of work booklets put out by the Cancer Council. These were really helpful for dealing with those really hard questions around death and dying, especially for families with kids. I was mentioning these booklets to a friend recently and that’s what brought me back to lvl 1 today. _DSC7625

Christmas Raffle at the Northern Cancer Centre downstairs.

Having photographed the doors upstairs, I asked the staff if I could photograph their Christmas decorations. I felt like a bit of an idiot, but I wanted to back up the doors upstairs with a another example of how the hospital was getting into the Christmas spirit. Anyway, much to my delight, they upped the anti and asked me if I wanted to have my photo taken in their elf frame. Being an irrepressible extrovert, of course, I jumped at the chance. It was a lot of fun.

 

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Before I head off and while we’re talking about the hospital’s Christmas celebrations, when I was there on Tuesday, a jazz band was playing the foyer and it’s something they’re doing during December. I couldn’t thank them enough. I’d actually just been to see a friend and it was an emotional time. So, it was really therapeutic to listen to the beautiful music and feel soothed. It was so thoughtful!

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Well, I realize that talking death, dying and hospitals is a rather gloomy subject at this time of year, when I reflect that I’m still here six years later and in reasonable health, it actually becomes a celebration. A good news story which might touch somebody else’s troubled heart with a touch of hope. After all, as much as we might not want to be in hospital, the alternative is far worse and rather permanent.  So, I’d better close off this Thursday Doors with a huge shout out to all the doctors, nurses, physios, OT’s and support staff who help get us back on out feet and out the door.

This has been another contribution to Thursday Doors hosted by Norm 2.0. Why don’t you come and join us and share a few of your favourite doors. It’s a lot of fun and helps you see parts of the world you’ll never get to visit.

Best wishes,

Rowena

Life Was Meant To Be Easy.

According to the “Feel Good School of Thought”, life is meant to be easy. Adversity is a transitory thing that we can simply power through, as long as we “think happy thoughts” and “stay positive”. “If it feels good, do it. If it feels bad, give up.” However, from this perspective, we might as well pull the pin when “shit happens”. There is no reason to live.

Yet, ironically humans thrive on being challenged, using our problem-solving abilities, and overcoming adversity. We’re meant to use what we’ve got, even if some of the equipment isn’t in peak form. Indeed, adapting to these challenges stimulates the mind. After all, we were never designed to be couch potatoes, or even worse, liquid mash. Rather, we were meant to grow roots and broad branches, and stand tall on the inside, no matter what our design. Just think about how often you hear heroic stories of everyday people overcoming huge setbacks and surging forward in a new direction. Indeed, their curse can even become their blessing. The Paralympians embody such triumphs.

“I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.

Once you choose hope, anything’s possible.”

-Christopher Reeve.

At a more basic level, I remember my Dad encouraging to overcome fear and have a go. His big line was: “it’ll put hair on your chest”. As a little girl, I didn’t quite get what he meant and took him quite literally and I didn’t want hair on my chest. However, these days, this sort of grit has been rebadged as “resilience”. This school of thought poses that we need to experience the bumps and knocks of life to grow stronger and prepare us for the big hit. This isn’t as much fun as thinking happy thoughts and only doing what feels good, but we do emerge more rounded and as the Scouts would say: “prepared”.

While that all sounds great in theory, it’s quite a different story when you’re lying face down in the mud with no known way of getting up. At this point, it’s quite natural to feel overwhelmed by shock, disbelief, anger and self-pity. However, if you want to move beyond subsistence, you have get yourself out of the quagmire and start thinking about taking those first few critical steps, be they literal or somehow figurative.  Staying put isn’t an option.

Rowena

This isn’t theory for me, but my own, personal experience. I have walked the talk, sometimes needing assistance.

When I was 25, I was diagnosed with hydrocephalus or fluid on the brain and six months later had brain surgery to insert a VP shunt. The hydrocephalus was pretty freaky. Although it was largely dormant for the first 25 years of my life, it rapidly became symptomatic and for the six month period in between diagnosis and surgery, I lived the bizarre and traumatic life of Oliver Sacks’s: The Man Who Mistook His Wife For A Hat. I had 6 months of intensive rehabilitation, learning how to walk and had occupational therapy to manage my life again. This all culminated in moving back in with Mum and Dad and a year off work. That in itself felt terminal. After all, when you’re living the story, you don’t know how it’s going to end. I slowly got back on my feet. Returned to work. Got Married. Had two kids. Then, the thunderbolt of medical misfortune struck for a second time. The birth of my daughter, triggered so much more than maternal joy. My hands turned raw. As it progressed, I couldn’t sit on the floor and get up again, dress myself. Eventually, 18 months later, I was finally diagnosed with dermatomyositis (DM), an exceptionally rare auto-immune disease where your muscles and skin cells attack themselves. As soon as I was diagnosed, I was put in a wheelchair and spent the next week or two in that and the next couple of weeks in a walking frame. I was only 36. Treatment made a vast improvement, but I went on to develop Institial Lung Disease with fibrosis, and affiliated chest infections nearly take me out most years. The Cough has now become such a permanent fixture, that I’ve called him Fergus.

I didn’t respond well to treatment for the DM, and five years ago, I had seven treatments of chemo. My specialist also changed my meds and I’ve been in remission ever since. Not smooth sailing, but still a relief. My kids are now about to turn 14 and 12 and still have their Mum. Moreover, I’m still an active part of their lives, even if I’ve had five years off work. I am so very thankful to be here. Yet, there are still times, especially when the cough flares up, that I get fed up. After all, I’m human, not invincible.

With the New Year, I’ve been rethinking my status quo and wondering how to get back into some paid work, while coughing like a mongrel dog and feeling dreadful in so many ways, that it’s tempting to sink underneath the waves and give up.

Prior to chemo, I had been employed as the Marketing Manager for a local IT Company one to two days a week. I’d also been working towards a motivational book about turning your mountain around. I had it all planned out. What had started out with a rather feeble New Year’s resolution to vaguely improve my heath through green smoothies, evolved into a surprisingly productive year. I lost 10 kilos, took up the violin and performed at the end of year concert, started the blog and tackled all sort of challenges at an adventure camp run by Muscular Dystrophy NSW…quad bike riding, sand boarding, para-sailing. It was incredible. I’d pulled off so many things I’d never thought possible, and was almost on top of the world.

 

All of these breakthroughs and successes were definitely book worthy and I thought my story could encourage others experiencing the hard knocks of fate, to give living a go. Living with two debilitating, life-threatening medical conditions and consequent disabilities, I was proof that it was possible to carpe diem seize the day even through times of serious adversity. However, my story wasn’t going to end there. The icing on the cake, which I intended to be the finale of the book, was skiing down Perisher’s Front Valley, in effect, turning my mountain around. Yahoo!

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Skiing in Perisher. You can see my instructor, Tom, in the background…the wind beneath my wings. I went as a member of the Disabled Winter Sports’ Association.

That was the plan. However, while I triumphantly skied down Front Valley, my “victory” didn’t match my expectations. Rather than the exhilaration of triumph, I felt my gut sink with unbridled terror as I perched precariously over the edge, with a huge drop off down the slope to the village below. I felt like fleeing straight back to the safety of the “magic carpet”. However, I had my ski instructor with me and Tom went backwards down the steep start and held my hands to ease me down. By the time I finally reached the bottom after a few spills, I was more relieved than jubilant and I was just glad it was over.

However, the story doesn’t end there. Triumph soon did a terrifying back flip, and even before we left Perisher, I’d developed a nasty chest infection, which turned into life threatening pneumonia. Indeed, one night in between coughing bouts, I actually stopped breathing.

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Playing Moonlight Sonata after chemo.

At this point, I also found out that the auto-immune disease was in a serious flare and was attacking my lungs. The Institial Lung Disease had become active and I had marked fibrosis in my lungs. Moreover, the report on my lungs read like the contents of a vacuum cleaner bag…ground glass, honeycomb. I was actually surprised there wasn’t any dog hair in there. Anyway, they started me on chemo (cyclophosphamide) a week before Christmas 2012 and I’ve got to say, I didn’t expect to be alive for Christmas 2017. I am a living, breathing miracle, which has been a comprehensive and intensive team effort.

As you could imagine, pneumonia and chemo weren’t the grand finale I’d planned for the book and the book is still on hold as I wrestle with what it really means to be a survivor, grappling with my numerous battle scars and LIVE on. I don’t merely want to exist.

This isn’t something I think about all the time. However, with the new year, I’ve revisited all of this. I’m still wrestling with THE COUGH, while also trying to get back to some kind of meaningful paid work. The two of them are looking very incompatible at the moment, but surely I can find something?

Pursuing this question further requires me to accept my weaknesses, but also to acknowledge and embrace my strengths. Know that I am not a dud. Rather, I’m human. We all make mistakes and have strengths and weaknesses. Of course, that’s something I would say with conviction to anyone else, but I struggle to find that in myself.

So, I guess this takes me to George Bernard Shaw:

“Life is not meant to be easy, my child but take courage: it can be delightful.”

When you’ve experienced adversity, how have you kept your head above water? Please leave your thoughts in the comments and links through to any posts.

Best wishes,

Rowena

This post was published on Smorgasbord – Variety is the Spice of Life.

Lungs, Lunch and Violin…Just An Ordinary Day in Paradise.

Yesterday, Geoff and I drove down to Sydney for what turned out to be: lungs, lunch and violin.

Well, that’s quite an over-simplication. Or, what you could call: “the bare bones”.

Starting with the lungs…

Lungs

Every three months, I have routine lung function tests followed by an appointment with my lung specialist to monitor the spread of fibrosis in my lungs and to manage infection and any other lung nasties. While my lungs aren’t great and I have about 60% lung volume at the best of times, the fibrosis has been pretty stable for the last two years and I even get the odd improvement. So, these appointments aren’t all doom and gloom and we usually have a few laughs with my specialist.

However, there is no denying the reality of these appointments. My lungs are my weakest link and so we’re pretty much staring straight into the face of fear, eye-to-eye, without so much as a blink. We are probing the depths, trouble-shooting and coming up with a detailed defense strategy. This is very sensible and naturally the more you know about your enemy and yourself, the greater your chance of victory. However, at times, these conversations hit a nerve and it’s like plunging a knife in a very raw wound and it’s not surprising that I completely freak out and leap out of my skin. Who wouldn’t?!!

Although I’m tougher than I used to be and am somewhat resilient, I’m not made of stone. I crumble and fall apart just like anyone else and wish I could cry. Cry buckets of tears but the well has run dry.

The key outcome of this appointment is that I need to start dropping my prednisone further. This is supposedly good news. I keep telling myself this is good news. That means that I’m doing well. The disease is being managed and the risks posed by the medication outweigh the likelihood of the disease flaring up. This is what I want.

I can say that more than 24 hours later when the dust has settled. However, yesterday I was beyond terrified and wanted to boot some poor innocent hermit crab out of it’s shell and move in. Lock myself away and shut the door. Never come out. I really had to remind myself of all those things you need to do when your journey hits a snag and the wind goes out of your sails ie walk, get some sun, play my violin. EAT CHOCOLATE!!

We are now getting pretty close to that invisible line where the disease starts to reclaim lost ground and if it isn’t managed like the precarious house of cards that it is, I could literally come falling down. Have a flare. Of course, this possibility terrifies me and for good reason and I feel like I’m about to drive a car over the edge of a very steep cliff and the waves down below are just waiting to wrap around me. Pull me under.

I don’t know how likely it is to go pear-shaped but my doctors seem reasonably confident. This would suggest that all my flapping around is mere “catastrophising”, even though I still see it as healthy self-preservation. I should be right dropping 1-2mg gradually over a few months but then the real test is on. They’re trying to get me down to 5mg. At this point, I’m very inclined to quote Darryl Kerrigan from the classic Australian movie: The Castle:

But sometimes, you need other people to have a bit of faith in what you can do and what is possible. Sometimes, you need that outside reminder and jolt that your dreams really can come true.

So, it seems, I have to swallow my own medicine and take a deep breath and swing from the chandelier!

However, our day was not all doom and gloom!

Lunch!

After dealing with the lung monster, Geoff and I headed down to Sydney Harbour for lunch at The Kirribilli Club in Lavender Bay. This was the perfect antidote. I chose this place due to its sweeping views over Lavender Bay, Luna Park and the back of the Sydney Harbour Bridge. We could see the planes coming in to land in the distance and the ferries chugging their way through the harbour to places like Manly, Balmain and Kirribilli. It was so incredibly relaxing and the perfect antidote for a stressful morning. I still felt agitated inside, way too much like a churning washing machine but I could also feel that calming salve mounting a counter-offensive and could almost relax. Watching the water is so good for that and so incredibly therapeutic!

By the way, I should mention that it was unseasonably cold and the wind was whirling around, slapping us in the face. Yes, it hurt!

I was mighty glad I hadn’t got around to packing up my Winter clothes because woollens are back on. Indeed, where are my thermals?

After lunch, we went up to my parents’ place to pick up the kids and have dinner.

My beloved violin.

My beloved violin.

Violin

I’d packed my violin and decided to have a bit of a jam with my Mum who is an accomplished pianist. She’s taught the piano for many years and now that she’s retired, plays in The Lyric Trio with a singer, clarinet and her on piano. They play at Nursing Homes and retirement Villages, pretty much out o the kindness of their hearts.

Playing with my Mum was a huge step for me. While it sounds simple and natural enough, I’ve only been playing for 3 years and for the last 12 months, I’ve been struggling to keep up with my practice, especially given the ups and down with my health. The violin is a very demanding instrument and it’s not easy for anyone to develop good bowing techniques and get those awkward, uncooperative fingers to behave and find exactly the right spot every time. When you mix these difficulties with someone else playing the  piano, my mistakes become horribly magnified…especially to a trained ear!! These mistakes aren’t anywhere near as fatal when I’m playing alone. Sure, I know it doesn’t quite sound right but there isn’t that discordant clang, which is almost as painful as fingernails scraped down a chalkboard.

Just to exacerbate my violin battles even further, my bifocals were struggling to read the notes and I was making more and more mistakes. This infuriates me, of course, these mistakes aren’t “me”. Or, at least, not a true reflection on my playing.

I’m sure I can hear you pondering about me and the bifocals and wondering  how they fit in since I don’t wear glasses but is a sin of omission ie taking my glasses off for photos really such an unforgivable sin?

I think I’ve just stumbled into another post.

xx Rowena

Poem- Walking on Water

2.00PM

Thursday.

It’s etched in my diary

in bright, red ink-

as if I’d ever forget!

 

It’s almost business as usual.

Just another appointment.

Yet, this one’s different.

Things have changed.

Now, I’m somehow tangled up,

caught in the twilight zone,

dangling down by my ankle.

Still walking…

Still smiling…

only upside down!

 

1.45PM…

I walk.

 

Almost there.

Early…

when I’d rather be late.

Calm and yet a pebble

ricochets across my pond

and its ripples spread.

Something gruesomely terrifying

is out to get me.

Gobble me up in one gulp

But it hasn’t quite found me yet.

I swim just beyond its jaws

and I am free.

 

I walk.

 

Paintings smile at me

from white walls

Clean but not sanitised.

Rainbow curtains promise hope.

So many hearts

trying to turn

these dreadful things around.

They warm my soul.

Hold me tight

in the very arms of love. 

 

I walk.

 

Cannulas,

needles.

treatments…

I know.

But this is chemo.

I picture the worst.

Hope for the best

But have no idea

where this journey will end.

I just want to get better.

 

But what makes me well

will also make me sick.

This toxic plonk

they strangely deem a cure

is hardly organic.

I’m very particular

about what I pour

inside my veins

and this breaks all the rules.

 

2.00 o’clock

Time has stopped.

Bang!

This is it.

There’s nowhere to run.

 

I used to be afraid

of the dentist.

 

An angel appears…

almost an apparition:

“Rowena!”

“Robyn!”

My nurse is with me.

She smiles a smile

which calms all fear.

It really is business as usual,

after all.

Now I know

everything really is

going to be alright…

at least for now.

 

A stranger makes me

a cup of tea

and I lean back to read.

Chemo begins

but there is no change.

No sudden explosion or tremor

spread throughout my veins.

Not even a ripple in the pond.

The sea is calm.

 

I am walking on water.

 

Rowena