Tag Archives: illness

Building Bridges Through A Game of Cards.

After parenting for awhile, you’d finally think you know what you’re doing.

Ha! Isn’t that the biggest joke!

As any parent knows, just when you’re comfortable and in the grove, the ground changes. They have another growth spurt. Start school. Get bullied. Become the bully. They have good days and bad days. There is no consistency.

You feel completely and utterly, lost, stumped, completely out at sea and …a bad parent.

However, no matter who you are, there inevitably comes a day when you kid gets stuck. The wheels stop moving and you, as parent, are called upon to pull out your magic wand and suddenly make everything better. You say a few abracadabras and tap your kid on the head three times but nothing happens. There’s not even a poof of smoke. You’re not sure what’s gone wrong. Perhaps, your wand is bent or the batteries are flat but, of course, you’ve lost the instruction manual.That’s if your wand ever had one. It’s amazing how few things related to parenting come with instructions, most notably, the kid themselves. Indeed, they arrived into this world with nothing at all but a scream.

Away, unable to get your wand operational, you’re stumped.

Your kid is stumped.

Hey, most of the time, even the professionals are stumped. That’s if you can get your kid to see any kind of professional. Chances are if they’re not moving, that’s the last place they’ll go.

Here’s a post I wrote recently about the misunderstood and hurting child: https://beyondtheflow.wordpress.com/2015/06/20/loving-the-misunderstood-when-kids-hurt/

Anyway, for many of us, Winter can be a bit of a downer. Mister has had a dreadful asthma cough, poor, broken sleep as well as some troubles with his stomach where he was seeing stars and vomiting for a bit. Of course, the Emergency Department had no explanation and there was the usual mention of a “virus”. He’s missed a lot of school and really was operating at half mast and it wasn’t depression either. At least, that wasn’t the trigger. That said, with all that going on, he was hardly doing the happy dance.

However, even though my magic wand wasn’t operational, I still had my bag of tricks. This is what I’ll call “experience”. Not just my own experiences but what’s worked for others as well.

As much as someone who is struggling can appear like a cactus and needing to be left alone, this can also a time when they cautiously need you to dig in. More hugs, not less hugs. Understanding, empathy, doing things together..even, perhaps, if the bedroom door is shut.

That said, you need a catalyst. Some way of making that connection and lighting that initial spark.

Well, believe me. I was looking. Looking…looking…Did I mention looking?!!!

I’m not saying that this will work for everyone or that this is going to work forever but I remembered that I used to play a lot of card games with my friends in high school. Both my parents were avid Bridge players who taught my brother and I how to play as soon as we were old enough.

Finally, I had that elusive “light bulb moment”! Teaching the kids how to play 500.

In addition to seeing it as something we could do as a family, I also thought playing cards is a good way to make friends. Moreover, being good at Maths, I thought he’d love it and our daughter also loves a strategic challenge. It is hard enough for anyone to feel good trying to get anywhere on their weaknesses and I thought playing 500 would bring out their strengths.

Don't you just love the hot pink of the macaroon mix?!!

Don’t you just love the hot pink of the macaroon mix?!!

So, after refreshing ourselves on the rules, we had a card’s night last Friday along with a range of scrumptious desserts made by Miss: Adriano Zumbo’s Raspberry and Chocolate Macaroons (packet mix but very good) and a Chocolate & Raspberry Surprise…a pizza made out of a firm chocolate ganache with “my precious raspberries” and a raspberry sauce on top. It was exceptional good and yet so simple and straight out of her imagination. I was stoked. Mister also made a Chocolate & Raspberry Fudge which was exceptionally high in sugar but very good as well.

My daughter's spectacular tower of macaroons.

My daughter’s spectacular tower of macaroons.

Our kids are 11 and 9 and although we had a lot of explaining to do about suits, right and left bowers, tricks and bidding, after a few open hands, they pretty much had the hang of it.

Well, that’s as long as you don’t count a mad bidding war between the two of them. We were playing boys versus girls. First, it was my daughter’s turn to go all out with the bidding, stretching it to 8 Hearts (note we can only lose 2 tricks). Unfortunately, we went down in a spectacular defeat. A hand or two later, our son repeated the crime, at least, making the score somewhat even. Neither of them enjoyed going down…a valuable life lesson!

We also had to teach them about “the poker face”.

If you are not familiar with 500, the Joker is the highest card and just let me say there was a certain amount of jubilation when the kids had the Joker. We’re talking about jumping up and down with ear-to-ear grins doing an extremely exuberant version of the Happy Dance. Definitely no mind-reading required.

This is also a good life-lesson. All of us need to learn the distinction between what’s public and private and that there are some things you need to keep to yourself. Given how people plaster all sorts of selfies all over the Internet these days, learning how to hold back is a valuable life skill.

Naturally, we are wanting to continue these card nights. Unfortunately, this is not as easy as it sounds, even though we’re all keen. There is always so much to be done! My real hope, though, is that the kids can teach their friends how to play and it’s something they can do together, beyond playing computer games. A way they can connect. With this in mind, we’re already planning to get a few families together to put the wheels in motion. I can’t wait!

I should just add that we are fairly involved in our local community. Our kids both do Scouts. We go to Church. We’re involved with the school. I’m even part of the local dog walking community. This gives our family this extra layer of support. We’re not parenting them alone and they also have also these beautiful outer layers of the onion…as well as our extended family. That means that as we head towards what is often seen as the tempestuous teenage years, that we have back up. We, and indeed they, are not alone!

I have to admit that I was jubilant when our game of 500 went so well and that I’d finally “done something right”! It’s so easy to feel like you’ve failed as a parent and that you’ve really lost your way but then all of a sudden, the light comes back on and the wheels are turning again. You might not always be all “happy family” but at least, you’re content!!

After all, so often relationships and people are not broken. The pathways just need a bit of weeding, maintenance or a new direction to reconnect. Relationships are a journey with ups and downs and twists and turns in the road…not a straight, level road!

Each day of our lives we make deposits in the memory banks of our children.
Charles R. Swindoll

I should also add that since my son fought off the virus and his cough has settled, he has also perked up a lot. That reminds me that as parents, we need to keep the faith and believe in the bigger picture and not get caught up in setbacks along the way which really can look like the end of the world.

We can never give up.

The one thing I haven’t mentioned, although I guess it is implied, is the incredible love I have for my kids and that connection we have. There is nothing else like it. Somehow, that love fuels my journey, even when I’m discouraged. During the terrible twos, I was told “tomorrow is another day” and that has also helped carry me though the rocky patches.

There are only two lasting bequests we can hope to give our children. One of these is roots, the other, wings.
Johann Wolfgang von Goethe

Do you have any advice for parents facing the teenage years? Anything you’d do differently?

Love and loads of patience and courage for the journey,

xx Rowena

Loads of messy dishes: the sign of a great night!

Loads of messy dishes: the sign of a great night!

When The New Yorker Came To Sydney.

Last week, I was absolutely stoked when I found a copy of the New Yorker when I took our daughter to her doctor’s appointment, instead of the usual trashy magazines. For a New Yorker, this would be hardly surprising but when you’re in Sydney, Australia, finding a copy of The New Yorker is a rare treat. It was time to celebrate!

Who hasn’t experienced the joy of being camped at the doctor’s waiting so long you’re putting down roots and all you have is a stack of trashy magazines for entertainment?  I’m sure the world over there are those familiar looking piles of trashy magazines, which should have been pulped long before publication. You know the sort of stuff I’m talking about where those flashy, glossy pages are smothered in the latest “Kardashian Krisis” and other celebrity crap. If you’re really lucky, there might also be some token National Geographics but don’t hold your breath!!

Knowing what to expect, I always BYO. Whenever I head down to Sydney for my specialist appointments, I usually take a choice of two books, a handful of pens and a writing pad to capture fleeting threads of inspiration. I must say that on some occasions, I’ve been bunkering down to write what seems like my entire life story, while I wait. It is nothing to wait for 1-2 hours for an appointment and indeed, there is a sign telling you to allow half a day. All this endless interminable waiting is all for a fleeting 15-30 minute appointment. While this might sound pretty dreadful, especially if you are seeing multiple specialists, it is what it is. I see my specialists for free so I’m not complaining. I just come prepared.

However, I can sure pick the newbies turning various shades of red and emitting shots of steam through their beetroot red ears while they openly complain that “being sick is a full time job”. Most of them could well be transferred to Emergency for immediate anger management. That said, being diagnosed with a serious disease is hard enough. Being forced to spend those precious, rapidly ticking away last minutes of your imminently evaporating life in the bland boredom of a doctor’s waiting room staring at white walls camouflaged by fancy prints, is enough to push even the most mild-mannered Clark Kent over the edge!! Trust me! I know!

I don't think hospital was on Dr Suess's list.

I don’t think hospital was on Dr Suess’s list.

Of course, nobody includes being stuck in a doctor’s waiting room on their bucket list when they have 24 hours to live! Not on your life!!!

However, all my expectations of waiting room literature were turned around last week when I took our daughter to her specialist appointment. Much to my delighted amazement, I found a copy of The New Yorker on the very top of the pile. Wow! I was thrilled. Indeed, “I had chills.  They’re multiplying and I’m losing control…” https://www.youtube.com/watch?v=J01QPxZFlw4

A cartoon from the New Yorker, which  I photographed on my phone.

A cartoon from the New Yorker, which I photographed on my phone.

The New Yorker is a rare breed in Australia so I was almost thankful that the doctor was late. I was glued to the pages and really had to peel myself away. Indeed, I was even taking photos of the funnies with my phone and seriously hoping the doctor didn’t catch me in the act. Of course, I was doing this in the name of serious journalism…snapping gourmet morsels to feed my blog!

The Statue of Liberty welcomes this adventurous Aussie Dreamer to the Big Apple.

The Statue of Liberty welcomes this adventurous Aussie Dreamer to the Big Apple.

For a few fantastic moments there, I felt myself being transported over the Pacific Ocean touching down for a refueling stopover in Hawaii to meet Max the Dog and indulge in a bit of Hula. Then, I was on a bit of a stop start journey through LA, New Orleans, Washington and finally touching down in New York in such a manner that I didn’t get my Wonder Woman cape caught on one of those spiky bits on the Statue of Liberty.

Just as well I didn't start singing and dancing in the waiting room! I have absolutely no shame!

Just as well I didn’t start singing and dancing in the waiting room! I have absolutely no shame!

I’m in New York and I can even hear Frank Sinatra singing New York New York: https://www.youtube.com/watch?v=K-0nNWOKK2Q

Though still sitting in the waiting room, I’m a  real New Yorker or at least a New Yorker with an Australian accent. Well, make that a sedated New Yorker with an Australian accent. Being a rather slow walker who doesn’t wake up before midday without intravenous caffeine infusions, I’d look like a comatose zombie among the fast-paced New Yorkers.

But then the dream shatters…

The door swings open and all my fantasies of New York are put on hold. The doctor is ready and it’s now time to discuss why my daughter doesn’t eat.

Humph! No more New York…New York…New York!

I’ve touched down with a painful thump and it’s time for a brutal reality check!!

New York…LA,Honolulu,Sydney, Wahroonga….Can’t keep the doctor waiting!

The door closes.

Have you ever been to New York and have any stories to tell? I am learning the fine art of living vicariously.

xx Rowena

 

Catching the Lift with Leunig

Sometimes I’m flapping my wings so much that I can’t even see what, or in this instance, who was standing right in front of me waiting to get into the very same lift. It was Michael Leunig…the cartoonist, poet, artistic visionary, philosopher, humourist. Of course, being my usually oblivious self, I had no idea. Fortunately, my friend tapped me on the shoulder and the next thing, I was boldly introducing myself and we shook hands. I actually shook hands with Leunig. Oh my goodness! I was never going to wash my hand again!!

Not only did I get the chance to shake Leunig’s hand, we talked. Even though I talk underwater, I somehow had to condense so much into just a sentence or two and managed to mumble something about him being a light bulb in the darkness when I had brain surgery. That was enough. After all, when you say you’ve survived brain surgery, people know that you’ve suffered. That you are a serious survivor and not some Mickey Mouse character who has simply stubbed their toe and had to write a tell-all book. I didn’t mention my subsequent battles with a very rare muscle wasting auto-immune with the unpronounceable very long name, dermatomyositis, or how that disease had spread to my lungs and I’d had chemo for Christmas. This collection of vicious diseases was too much to explain to anyone in a lift, even Leunig but I was using my walking stick and its presence alone spoke volumes.

I’m not sure how well Leunig is known overseas but in Australia, he has officially been cited as one of our greatest living treasures. Leunig is a man with such vision, that he can see through all those camouflaging layers we’ve so carefully wrapped round and round our fragile souls and he can put his finger on our broken hearts and heal the hurt…or at least offer a good dose of empathy and compassion.

In the introduction to The Prayer Tree, a gorgeously inspiring little book which is the perfect gift for anyone going through a hard time, Leunig writes:

It is difficult to accept that life is difficult; that love is not easy and that doubt and struggle, suffering and failure, are inevitable for each and every one of us.

We seek life’s ease. We yearn for joy and release, for flowers and the sun. And although we may find these in abundance we also find ourselves lying awake at night possessed by the terrible fear that life is impossible….

It is difficult indeed to accept that this darkness belongs naturally and importantly to our human condition and that we must live with it and bear it. It seems so unbearable.[1]

Leunig is absolutely superlatively amazing and yet, Leunig the man…the man you meet in person …is humble, seemingly ordinary and easily blends into the crowd. He is neither tall nor short with curlyish light grey hair and when he speaks, he is very natural and very down to earth. There are none of the airs and graces mere mortals expect of greatness or from the pseudo artiste! This is why we love Leunig. He is real…so very, very real and authentic. It is this authenticity which really stands out in what can be a very superficial world. As does his kindness and compassion.

Sydney Writers' Festival

Sydney Writers’ Festival 2013

Despite my many years of attending the Sydney Writers’ Festival, I have never been to a session with Leunig before and only recently I’d became aware of that gap, which was so much more than a missing notch on the bedpost. I really felt I could learn a lot not just about creativity, writing, art but also about life and being spiritual from Leunig. After all, aren’t so many of us desperately seeking that inner transformation and some way of overcoming our struggles and learning how to glow in the dark? This has been my journey…to suffer yet find happiness. Go through periods of light and dark and as a writer to share these experiences with others and help us all feel a little less alone. I want people to know that they can also live with shadows and still know happiness, joy…life!

At the end of the session, there was question time. They are pretty strict with this question time. It’s not the sort of place you can stick your hand up and tell your entire life story or even more pertinently ask Leunig about the colour his underpants. Definitely not! You need to sound smart and your questions also need to be succinct, to the point and as carefully crafted as that elusive first novel. There is even an official “keeper of the mike”, so you almost need to have the full dress rehearsal before you even stick up your hand.

Despite these very intimidating surrounds, I always ask questions at the SWF because I figure this is my only chance to plumb the depths of some incredibly successful writers and somehow perhaps actually launch my own small boat into that enormous sea. Last year, I was very proud of myself when I actually dragged my shaking self up to the mike to ask Hollywood actor and now writer Molly Ringwald of Breakfast Club fame a question in the equally intimidating Sydney Town Hall with its ginormous pipe organ towering overhead just to intimidate me even further. Yet, this was the chance of a life time for this little pipsqueak of an unpublished Australian writer to actually speak to Hollywood super-stardom and I couldn’t wimp out. I did it.

So there I was a year later in the middle of yet another potentially intimidating and erudite crowd along with the gate keeper of the mike, and I stuck up my hand. Not to stick to the rules and actually ask a question. Not to tell my life story either but I wanted to thank Leunig for being there for all of us who have been lost in the dark and Leunig has been that light. While the theatre erupted in applause, this was a little controversial and involved bending the rules. I can’t remember what I said but the words just came out. I was amazed at my own eloquence as I can stammer and stumble over basic sentences even at home, but I have a funny feeling that these words didn’t come from me but were something of a wind or spirit simply passing through. I was just the messenger.

Thanks to meeting up with Leunig in the lift prior to the session, I had arranged to meet his publicist afterwards so I didn’t have to queue up during the book signing. However, we somehow managed to arrive before the hoards and there was this ever so small gap while they were getting set up… you could say a very pregnant pause. While he was signing my books, Leunig and I exchanged a few words and a glance. I felt such warmth and compassion in his eyes. I knew that he knew. He knew all those thoughts and feelings of light and dark that even I with all my great love of words, can not truly express. Leunig and I had made a connection, which for me was an incredibly deep and penetrating connection…two fellow soul travellers. I immediately felt so much less alone.

You can’t encounter Leunig in any medium and not emerge a changed person. It is an old cliché about the butterfly emerging from its chrysalis but it is oh so true! Our modern world can be so fragmented and isolating and then there are horrific experiences which also isolate us, even from those we love and love us. That is possibly the greatest problem…those toxic private tears which drip one by one down the back of our throats and into our hearts because for whatever reason, we just can’t get them out. Sadness and an acute awareness of our own failings are not easy feelings to share and most of us can’t just go and paint these feelings on a t-shirt and show the world or even our nearest and dearest. Leunig does. He knows our humble feet of clay and is more than willing to walk with us through the abyss. He might draw us a nice little window to look outside into the sunshine or add a light. He might even lead us outside into the sun to walk with his duck through the flowers because he wants us to know that just as life isn’t all light, it isn’t all darkness either. That we can more than survive our hurdles. Indeed, we can thrive. Yet, if we’re still not thriving, that’s okay too. He seems to have a real understanding of that little person who never, ever makes it.

To experience more of Leunig, you can read his bio and check out some of his works on his web site at www.leunig.com.au

I’m sure you will more than understand why his works mean so much to me!

Love & blessings,

Rowena

[1] Michael Leunig: The Prayer Tree, Harper Collins, 1990 no page numbers.

Chemo Adieu and Getting Through

Wednesday 22nd January, 2014

8.30AM Coffee and muesli

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

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

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

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

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

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

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

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

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

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

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

Back to tomorrow.

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

These are the three outcomes:

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

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

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

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

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

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

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

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

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

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

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

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

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

That’s what it is like with this disease.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

xx Rowena

 

Day 3: Yeast Pizza from Scratch and Quirky Apple Pie

Day 3- Wednesday 16th January, 2014

It just crossed my mind that I should point out that our kids are currently on their extended summer school holidays which has provided us with the luxury of being able to cook leisurely meals together without having to dash off to after-school activities or manage homework.

Cooking with a view.

Cooking with a view.

Our latest cooking experience has served once again to remind me that doing anything with the kids usually comes with its share of surprises even when I try to stay at least one step ahead of them.

Day 3: Wednesday 16th February we had Yeast Pizza from Scratch for dinner and Quirky Apple Pie for Dessert. We’ve given both of these recipes the thumbs up and will be cooking them again but not both on the same night. They are both rather labour and time intensive and would be better matched up with quicker alternatives.

Still in my PJs late afternoon helping the kids with the dough

Still in my PJs late afternoon helping the kids with the dough

Cooking tonight’s meal proved more stressful than previous nights.

I was definitely being over-ambitious making Pizza and Apple Pie both from scratch on the same night, especially when I have an early start getting to chemo in the morning. It also just occurred to me that I hadn’t cooked either of these recipes before and so I was also on a learning curve along with the kids. That said, they were most fairly simple dishes in themselves but having to explain seemingly steps in intricate detail for the kids and demonstrate how to do things like peel and cut the apple, did complicate things and added significantly to the preparation time.

Dinner ran late and the kids went to bed before Geoff and I sampled the pie. The kids had their for afternoon tea on Thursday after I’d arrived home from chemo.

The cooking plans were further over-stretched by what has become our routine pre-dinner swim in the pool. I had been promising to take the kids for a swim in the pool most of the afternoon but had a nap and their swim just kept getting pushed further out. Unfortunately, this promise was wearing rather thin and looking threadbare by late afternoon when I told the kids we needed to make the pizza dough first. From my point of view this was good planning and time management. The dough could rise while we were swimming but the kids weren’t convinced. They could sense a fob off a mile away but they reluctantly acquiesced.

However, then I remembered that we also needed to make the pastry for the Apple Pie and it needed to go into the fridge for 30 mins to rest. In terms of trying to have something resembling time management, that also meant making the pastry before we hit the pool. By this stage, the kids were staging militant protests. They weren’t happy at all!  My promises had gone from stretched, to threadbare and were now stark naked and I was bluntly accused of “lying”. I immediately leaped to my defence and did some exceptionally fast back-peddling explaining and they caved in. Somehow I was going to take out the Guinness Book of Records title for making the world’s fastest pastry.

I must admit that I was also keen to get into the pool. I’d missed out on my laps on Tuesday and I needed to get them in today. Aside from medical intervention, this swimming is my best shot at improving and conserving my lungs. It is essential.

Of course, with my little apprentice chefs focused on swimming, they weren’t at their enthusiastic or focused best. They were also starting to bounce off the walls a bit too. It was a hot day and they had been cooped up for too long inside to stay out of the sun.

Making the Pizza Dough

Ingredients:

1 sachet of dried yeast (7g)

1/2 teas salt

2.5 cups of plain flour

1 cup of warm water

1 tbl olive oil

Directions:

  1. Sift flour and salt into a large mixing bowl.
  2. Using a pair of scissors, snip open the packet of yeast and add it to the other dried ingredients. Ensure the kids don’t tear the packet open as the yeast will spill everywhere.
  3. Stir the dough with a spoon to mix the ingredients together and use hands and tip the dough onto a floured board. Knead the dough adding flour or water until the dough is dry to touch yet elastic. It needs to look like the dough you see in the pizza shop window.
  4. Place it in a large, deep bowl and put it in a sink with warm water, ensuring the water level is well below the top of the bowl. Leave for around 30 minutes until the dough has doubled in size.

Comments

This recipe came from my Australian Women’s Weekly “Kitchen” Cookbook.

Making the pizza dough is a great educational opportunity to teach the kids about the properties of yeast, its history  and how it works. I found this fabulous web site which does a wonderful overview: http://www.breadworldcanada.com/sciencehistory/science.asp

Hands only Grandma could love!

Hands only Grandma could love!

If you are making the dough with more than one child, I strongly recommend that each child makes their own dough. It was an exceptionally fun, very tactile, creative experience for both children and they loved delving both hands into the flour, kneading the dough and getting the right consistency. They were also quite possessive of their dough and there really wasn’t room for two sets of hands. Grin at the mess and bare it.

Just really make sure they wash their hands well before and after. Mine needed to use the scrubbing brush to get it off. If you are worried about germs, you’re better off buying a pre-made crust or doing it in the bread maker. We’re building up our immunity in this household.

Making the pizza dough was definitely what you would call “an experience”. The dramas began when the kids ripped open the little metallic sachets of dried yeast and the yeast spilled all over the table, chairs and onto the floor. To make matters worse, the balcony doors were open and there was quite a sea breeze and the yeast started to blow everywhere. This naturally made the kids rather upset, not to mention me! It was time to start practicing my deep breathing techniques before I lost my cool.  I am finding throughout this cooking project that the kids manage to do things I’d never even considered. After all, who would think about the yeast blowing away?

DSC_7463

Miss turned sifting the flour into a creative exercise. As she was sifting, she announced: “Pat, pat, pat I’m making a mountain…It’s snowing and I’m at the Snowy Mountains”. She then went on to draw faces in the flour: “Time to make an alien face”.

Such cheap and expressive creative entertainment...and fun!

Such cheap and expressive creative entertainment…and fun!

While I was pursuing culinary excellence, the kids had discovered the age-old wonder of flour, yeast and water and the wonderful squish of dough between your fingers. Miss announced: “No point using a spoon to stir it. Let’s get messy!” Meanwhile, Mister managed to coat his hands in wet, sticky dough. He was having a ball playing with the stuff. It was great entertainment even though it was a very sticky, messy blob bearing no resemblance whatsoever to the neat little ball you see in the pizza shop window.

The Abominable Doughman

The Abominable Doughman

We managed to make the rest of the dough without incident although Mister’s dough was too wet and Miss’s dough was too dry. Go figure? They were made using exactly the same recipe and I oversaw the ingredients. It is another one of those great mysteries of science. This is where a bit of improvisation comes in and knowing what that lump of pizza dough looks like at your local pizzeria and adding water or flour until the consistency looks right.

The dough looks surprising "normal" rising in the sink after all that action from the kids.

The dough looks surprising “normal” rising in the sink after all that action from the kids.

We put the dough in a large bowl in a sink of warm water to help it to rise.

Meanwhile time to make the pastry for the apple pie.

Quirky Apple Pie

I don’t know why I felt such a burning desire to make apple pie with the kids. I’ve never made apple pie before unless you count the one I made in the pie machine recently which was simply puff pastry filled with grated apple sprinkled with brown sugar. It tasted great and was super quick but it was hardly authentic.

The Quirky Apple Pie isn’t what I’d call a traditional Apple Pie either but at least we’d made the pastry from scratch and it was baked in the oven with real apples. Geoff said it reminded him of his mother’s apple crumble recipe and with all the brown sugar and cinnamon in this recipe, that’s more the flavour we experienced.

Choosing a recipe for our Apple Pie was quite a stressful, confusing business. There are millions of recipes out there and I just wanted to get it right the first time. I didn’t want to go on some crazy apple Pie baking crusade spending the rest of my life trying that elusive perfect recipe…the Holy Grail. Life’s too short. I was intending to make a more traditional English style Apple Pie, however, I came across a pie plate at the Red Cross Op Shop in Avalon and it had a recipe printed onto the dish. This seemed like a bit of fortuitous serendipity to me. It was meant to be. This would be our Apple Pie.

However, upon closer inspection, it turned out that the recipe didn’t include a pastry recipe so I needed to consult Google on the fly ensure I had all the required ingredients. The kitchen here is very rudimentary.

Pastry for our Apple Pie:

1 3/4  cups plain flour

1/2 cup  self-raising flour

185g unsalted butter, chilled, cut into small pieces

1/3 cup caster sugar

1 egg

1 tablespoon chilled water

Directions

  1. The kids need to measure and carefully slice off 185g of butter making sue they  keep the knife straight to ensure measurements are accurate. This proved tricky.
  2. Beat egg and chilled water together with a fork.
  3. Combine all ingredients in a food processor until a dough is formed.
  4. Adult removes the blade and the child can scoop the pastry out with a large spoon and transfer it to a bowl or plate.
  5. Divide the pastry into 2 balls one larger than the other. The larger ball will form the base and the small one will be the top. I asked Miss to put some flour over the pastry. In keeping with the pizza making efforts, however, she buried the pastry in a blizzard of flour so you need to emphasise that the children only use a little bit of flour…a dusting. I pulled out the cling wrap and passed it to Miss who wrapped the pastry up. While she made a comment about “not being a very good wrapper”, she did a great job.
  6. Keep handling of the pastry to a minimum and keep it as cool as possible. Pastry doesn’t like hot weather.
  7. Refrigerate the pastry for 30 minutes.
The difficulties of cutting the butter in a straight line.

The difficulties of cutting the butter in a straight line.

The pastry is ready to go in to the fridge. Hadn't noticed my paint brushes on the bench...oops!

The pastry is ready to go in to the fridge. Hadn’t noticed my paint brushes on the bench…oops!

Swimming Time!

So we were now at the stage where we had the pizza dough rising in the sink and the apple pie pastry chilling in the fridge. It was finally time for our swim. We really didn’t have time for a swim but I’d promised and promised and promised. The kids really love our time together in the pool. They were racing me as I did my laps and instead of the piggybacks I gave them the other day, I was their dolphin and they sat on my back while I largely swam underwater. I did my 20 laps and also played mermaids with Miss and raced Mister. I am quite amazed at what was possible despite my muscle weakness and dodgy lungs. Surely, the treatment has to be working?!!

 Back to Dinner…Pizza Time!

Ingredients

Pizza dough

Tomato paste or pizza sauce

Teaspoon of crushed garlic per pizza

Grated mozzarella cheese

Diced leg ham

½ tin of diced pineapple

½ punnet cherry tomatoes

2-3 slices of wasabi cheese sliced into small cubes about 5mm across

Fresh rosemary

Roasted diced sweet potato

Directions:

  1. Preheat oven to 200 °C.
  2. Grease 2 x pizza trays with spray oil.
  3. 3.       As each child had made their own pizza dough, we had enough dough for two thick-crust pizzas…one for the kids and one for the adults. The kids had a Ham and Pineapple Pizza and Geoff and I had Ham & Veggie Pizza with Wasabi Cheese. As we didn’t have a rolling pin, the kids simply pressed the dough into the tray.
The kids' Ham & Pineapple goes into the oven

The kids’ Ham & Pineapple goes into the oven

Kids’ Ham & Pineapple Pizza

  1. Spread the tomato paste and crushed garlic over the top of the pizza base until well covered.
  2. Sprinkle the mozzarella cheese over the top until it is about 2cm thick.
  3. Scatter the pineapple over the top of the cheese. Make sure the pineapple is spread evenly across the base to ensure good coverage.
  4. Dice leg ham into 1-2 cm cubes and spread them evenly across the base again ensuring good coverage.
  5. The kids sprinkled a layer of grated mozzarella cheese about 2 cm thick over the top and then scattered about 125g of pineapple pieces over the top as well as pieces of leg ham. Had to remind them to spread the toppings evenly over the top. That went into a hot oven for roughly 15 minutes. Aside from making the base too thick and giving it more of a foccacia appearance it went well.
The Parents' Pizza

The Parents’ Pizza

Parents’ Pizza

Geoff and I had ham, roast sweet potato, cherry tomatoes, grated mozzarella and small cubes of Wasabi cheese on ours.

Kids' Pizza

Kids’ Pizza

The Results

The pizzas turned out very well. The base of the kids pizza was too thick and more like foccacia but aside from that it went well. There was plenty leftover for lunch on Thursday for Geoff and the kids while i had my hospital sandwich.

Back to the Apple Pie…Apple Pie Filling

Ingredients:

1.5 tablespoons white sugar

1.5 teas cinnamon (original recipe had nutmeg)

4 large granny smith apples (the green ones)

¾ cup light brown sugar

2 tablespoons of butter (60g)

2 tablespoons of plain flour

¼ to ½ cup of grated cheese

  1. 1.     Directions:
  2. Pre-heat oven to 200°C.
  3. Grease a deep 9 inch pie plate with spray oil.
  4. Take the larger ball of pastry. As we didn’t have a rolling pin, we simply pressed the pastry into the pie dish. However, when I pressed the pastry into the pie dish, I forgot that the recipe for the apple filling was printed on the surface so I hastily had to excavate and retrieve it. It was a hot day and the pastry didn’t like being handled but it survived.
An impromptu scavenger hunt searching for the recipe through the pastry.

An impromptu scavenger hunt searching for the recipe through the pastry.

5.Sprinkle the top of the pastry with white sugar mixed with a dash of cinnamon.

6.In a large mixing bowl, add brown sugar, flour and 1 teas cinnamon.

7.Peel apples and cut into quarters and remove the core. Slice each quarter into 3-4 slices. I gave each child an apple to peel. Peeling the apple took a bit of patient effort but after a few demonstrations and “can’t do it”, they both succeeded but it was quite a slow process. I tried Mister out on cutting the apples. He couldn’t cut through the apple but managed to cut the halves into quarters but then he cut his finger. Realised I shouldn’t have given him this knife and he should have had something like a standard dinner knife. Wanted to see how he managed. I peeled and sliced the rest of the apples.

8.Add sliced apples to the flour and sugar mix. Toss together with a spoon until the apples are coated by the mix.

Just look at all those scrumptious apples with all that seductive brown sugar.

Just look at all those scrumptious apples with all that seductive brown sugar.

9.Add the apple mix to pastry. Arrange the apples slices so they sit as flat as possible to conserve space. The top layer of pastry just managed to stretch across the top of the apples.

10.Cut the butter into bits and dot the apples with the butter.

Rolling out the pastry using Geoff's bottle of wine.

Rolling out the pastry using Geoff’s bottle of wine.

11.As I mentioned before, we didn’t have a rolling pin to roll out the top so I decided to improvise. Geoff had a bottle of wine on the bench. I coated it in plastic wrap and used it to roll out the pastry with a bit of assistance from Miss. The pastry broke into a few pieces and I wasn’t sure that there was going to be enough to deal the top but we just made it. It actually looked quite respectable… rustically homemade. Not a perfect job but it was good enough.

12.This recipe says to sprinkle the top of the pastry with grated cheese. Now, this seemed a bit odd but it is a bit of a Canadian thing to add cheese to apple pies so I thought I’d give it a try.

13.Put the pie into the oven at 200°C for 30-45 minutes and said a few prayers. It all seemed pretty dodgy to me. Did not feel at all confident that this pie was going to work out at all. Geoff wasn’t too encouraging either. Thought I should pre-cook the apples.

The Results

Our Quirky Apple Pie is finally done.

Our Quirky Apple Pie is finally done.

Despite all my misgivings, I was absolutely stoked with the results. The pie totally exceeded my expectations. It certainly wasn’t your conventional English Apple Pie due the brown sugar and butter content which gave in a flavour similar to Apple Crumble, which we all loved. The apples were quite firm and Geoff felt could’ve done with a quick zap in the microwave but I liked that and when we reheated it today, the consistency was great.

We will definitely be making the Quirky Apple Pie again.

Tomorrow night, Geoff and the kids will be cooking Roast Lamb and veggies. This seemed like a quick and easy meal while I’m recovering from chemo.

Seeds for the New Year

January 2, 2014

Seeds in anybody’s language spell hope, new beginnings…the start of a dream but for me there was an added resonance.

Yesterday, I received the ultimate New Year’s gift.

It wasn’t expensive or luxurious.

In fact, it was deceptively simple and it cost its giver nothing.

Not even a cent.

“How is this so?” I hear you ask in a very Professor Julius Sumner Miller tone of voice. Perhaps, you haven’t heard of him but he used to host a science show called “How is it so?” and he also did an ad for Cadbury Dairy Milk Chocolate where he managed to get a boiled egg inside a milk bottle. It was pretty impressive stuff.

Julius Sumner Miller

This was in the days before a more recent Australian politician, Pauline Hanson, made the phrase: “Please explain” legendary.

Well, I am overflowing with explanations.

The kids and I were visiting some friends. All the kids were playing. I’d brought my friends some of my White Chocolate Rocky Road and she’d given me a slice of her Wild Strawberry Cheesecake, which was incredibly lush and made completely without additives and nasty chemicals. Wow! It was exceptionally creamy and I must admit I was feeling rather spoilt. This is the sort of thing you usually have to go to a café or gourmet bakery to find….very, very nice. My friend also made me a cup of tea and there is always something particularly healing and soothing about someone else making you a cup of tea, especially when you are a busy Mum and always seemingly looking after everybody else. She was an angel.

While the kids were bouncing round in the pool, I couldn’t help notice all their veggies. They grow their own tomatoes, beans, beetroot and more in garden beds raised above the ground. All these veggies, which could almost amount to a small market garden, are growing slightly more than a stone’s throw away from the beach on a standard suburban block. Quite a miracle really except you can see this garden is very well-maintained and cared for. Loved.
I was incredibly impressed and inspired.

Not that I looked at their set-up thinking: “if they could do it, I could do it”. Not on your life!!! However,  I did consider that just maybe we could manage one tub…a veggie patch on a smaller scale and actually grow something! The rest of our garden might be derelict but perhaps we could manage to look after this small patch of soil and develop our own backyard “oasis”.

Actually producing veggies we could eat would be nice but that would be more of a by-product. I was equally interested in the gardening experience in itself and all that excitement that comes with planting seeds and waiting, waiting, waiting for that very first green shoot to finally poke its head through the soil to greet the sun and a whole lot of eager watching eyes. The kids would love it. I remembered picking beans straight from my grandfather’s vine and just how amazing that was. As a child, it was a veritable miracle!

Moreover, being somewhat of a life-lesson addict, I thought the routine of having to water our plants was going to be good for the kids as well. Routine, responsibility, nurturing…these are all important life skills. Things perhaps you could learn from books but I really doubted you could learn them from playing Minecraft, even if you do get to grow virtual crops!  They need life experience as well. To do things with their hands aside from pressing buttons all day.

There was only one drawback to my veggie garden scheme.

Me!

Although I’ve always loved gardening and used to have quite a green thumb and have grown my own herbs, bulbs etc even in our exceptionally barren and sandy beach soil, I’m not good at keeping up the watering and so many, many plants have died from thirst.

In other words, I’ve become a plant killer.

Now, being a loving, caring and nurturing person at heart, I’ve had more than a little guilt over this and stopped buying plants until we could get the watering system going again. We’ve been on drought status and water-restrictions for many years but now we have no excuse. Water restrictions have eased and while we still need to be responsible about our water consumption and I do tend to re-use water at home, we can actually water our plants.

However, I have a very bad track record. It all starts out alright but slowly but surely the watering tapers off and without rain, we all know what that means.

But I am always a firm believer in change. Personal growth. After all, we are fluid, flexible beings. We’re not set in stone.

So after expressing my interest in starting our own veggie patch, my friend gave me a handful of dried beans filled with seeds with the potential to create our very own bean plantation in our small, yet to be constructed, backyard tub.

I carefully, put the beans in my handbag trying to think of the right words to tell Geoff, ask Geoff, to build our veggie patch. It wasn’t exactly the best timing but it was something we could do together as a family and I wanted the kids to learn all about gardening, soil, watering, worms…our environment. We have had a worm farm for 4 years and so this would just be an extension of that and indeed it would be a great use of all our juicy, fertile worm dirt. It no longer go to waste just sitting at the bottom of the tub. We would convert it to lush, fresh produce oozing with vitamins and none of the horrible chemicals. Perfection, in other words.

But as I said, this isn’t exactly the best time to launch into new gardening project even a small-scale because we are currently struggling to manage the everyday stuff and when you consider Maslow’s Hierarchy of Needs, growing your own veggies is more of a luxury not an act of survival. At least, when you live walking distance to at least three huge supermarkets and a great fruit and veg shop, it is.

I guess this is where I really have to stop being cryptic and answer your “please explain”.

You see, I haven’t really explained or updated my health status for some time. Even though I am fairly open about my life, I have struggled to find the words and it is difficult to tell people when things get worse, when I have a setback because I know that even people I haven’t met in this weirdly intimate world of blogging, care about me.  We are only human and you don’t need to meet in person to be a friend, to love or to care. My situation is also quite emotionally charged because I have young kids and it’s not nice having to think about children potentially growing up without their Mum but that is what we live with. We are conscious of this as a possibility as it is for any one of us. We are just more conscious of this possibility than others and can actually take steps and plan ahead. Not for the eventuality but the possibility. While this shadow lurks around,it also enables us to capre diem seize the day and squeeze the marrow out of life. We have fun!

Anyway, a few months ago, I developed pneumonia. This wasn’t as bad as pneumonia gets but it was pretty awful and I spent 3 weeks in bed and was coughing so badly that I pulled muscles in my stomach. That’s never happened before and that was really scary and it hurt. We put the kids in before and after school care for 2 weeks straight…something we’ve never done before. It was a big deal. Things were pretty serious and we were considering hospital but there was also the risk of catching something else in there so Geoff wanted to keep me at home.

My GP sent me off to get lung x-rays and these showed some issues so I went for an updated CT Scan. I’d had my last CT scan two years ago and it had shown mild institial lung disease, which is a form of fibrosis. This wasn’t considered a problem at the time but they started monitoring things more closely. This is a nasty disease and it kills. But treatment is available and of course, works better when you catch it early, which we have. Monday I saw my rheumatologist. Tuesday his secretary called and Thursday I started chemo along with transfusions of methyl prednisone, which has all the reverse side-effects of the chemo and makes you really bouncy, euphoric and unable to sleep. It’s like buzz! Buzz! Buzz! All this steps are designed to reduce inflammation and gain control of my disease.

This situation may not be ideal but I am certainly in the best position to mount a counter offensive and I am also looking at other ways of improving my lungs such as swimming and playing the recorder.

Of course, the side-effects of the chemo can include losing my hair. I almost had to laugh at that because after taking 6 years to finally get my hair cut off and being really pleased with the results, now I was being threatened with losing the lot. 90% of me didn’t care as I had no doubt that losing my hair was nothing compared to saving my lungs. I need to breathe. But at the same time there was still a residual “growl”. I figured that it would be just my luck for my hair to fall out just when I’ve got it all sorted.” I really do love my new hair.

So far so good. My hair has stayed put and I’ve had none of the expected side-effects from the chemo aside from fatigue. I have a few buzzy days after my treatments from the prednisone and then a few days feeling wasted and then I’m back on deck for the next one.

While chemo might and I guess certainly does sound depressing, right from the start I have been telling myself that it is only six weeks. Being in the lead up to Christmas, I thought of the kids countain down the number of sleeps until Santa arrived and I would do the same…6,5,4,3,2,1…blast off!

This really helped me face my first treatment and now that the side-effects are nowhere near as bad as I’d expected, the countdown isn’t really an issue. I had my third treatment today so now I’m officially halfway. It’s all been going so quickly.I also made jokes about getting chemo for Christmas, which in reality is the best Christmas present I could have. Treatment and hope. These are a gift.

Yet, to be perfectly honest with you, the important thing isn’t just surviving chemo and getting through.

What matters is that it works. That my auto-immune disease responds and goes back into its cupboard and doesn’t come out.

A rainbow of hope.

A rainbow of hope.

That’s the real waiting game. My cough has dramatically improved. Yet, as positive as I am, I still have doubts. Just like the seeds of faith, the seeds of doubt can also germinate and grow like crazy…the weeds in the garden of hope.

That’s where my ultimate New Year’s Day present comes in…those bean seeds.

It didn’t hit me straight away but those seeds were almost like a promise ….a hope. I will get better. Those seeds are offering me the vision of a brand new life and healing…renewal. I cling to that hope and pray!

Now, I don’t know that for sure. My disease has been pretty resistant in the past but it has also responded…eventually. I like the science behind my new treatment. I will also be treated with a drug called rituximab after the chemo and it is a much more targeted therapy without the toxicity of the chemo. It really could be the treatment that will ultimately work for me and you can only access it after other avenues have failed due to the cost.

So it could be that while this setback is serious, it could well be that coldest time of night before dawn. That this new treatment should and could be the solution!

That is our prayer and our hope.

I would love to receive any words of encouragement or stories of overcoming the odds. It would mean the world to me.

Love & best wishes,
Rowena xx

I was given a handful of dreid golden beans filled with seeds….the makings of our new veggie patch.

Poem – Mummy

The steadfast oak

stands strong and proud –

an omnipresent silhouette-

in the local park.

 

Her roots spread deep

throughout the earth.

She’s rock solid.

A survivor.

Victorious over much adversity:

drought, wars, storms,

the angst of love gone wrong.

I    Love     u

is still carved in her bark,

long after the lovers have gone.

 

Children climb.

Lorikeets, magpies, noisy minors

all chatter, sing and squawk

in her strong, muscular  branches.

Possums play ping pong

long after dark.

A myriad of bugs

march, flutter and buzz

through her crisp, green leaves.

 

Bursting with acorns,

she is the tree of life

carrying the world

on her shoulders,

while cheerfully smiling

up at the sun.

 2.

It was neither autumn,

winter,

nor the time for old age.

Somehow,

the rot just set in,

eating away all her strength.

All floppy jalopy

with a rubber trunk,

she could barely stand up.

Yearned to become a chair.

Rest.

Fall asleep.

 

But an oak is still an oak.

Children climbed her hollow branches

at their peril.

The lorikeets, magpies, noisy minors

still sang oblivious to her cries.

Possums still played ping pong after dark,

although fatigue smothered her

like a fatal shroud.

The bugs never, ever stopped.

As much as she tried

to kiss them goodnight,

they couldn’t see

and she couldn’t speak.

Slowly but surely

the world was sinking.

About to fall off

those once firm shoulders

and crack like a fragile egg.

 

Splat!

 

3.

 

But then the gardener came.

The gardener came with x-ray eyes

somehow sensing her weakness,

despite her strength.

He knew the tree.

Cell by cell,

he painstakingly

restored her soul,

making her whole.

 

Strong, scarred

and a little crooked,

the oak again stands tall

carrying the world

on her shoulders,

smiling at the sun…

the tree of life.

 

15 & 16th August, 2013

 

Reflections…

 I have been feeling tired and rundown lately and yet am expected to keep going. The kids jump all over me with no idea that I am struggling to stand up. That I’m stumbling. Perhaps, that’s my own fault. I cover my tracks too well.

 

When it came to writing this poem, initially I wanted all the critters to get out of the tree. Give the tree a break. But then I realised that the tree loved being part of that community. That they gave her life. I realised that I push myself to spend time with my kids, to be a vibrant and active part of our community and this connection gives me life, even if it does sometimes feel a bit too much. I struggle to pick the kids up from school most afternoons because I love to be involved, catch up with my friends and fellow parents and be an active part of the school. As much as I struggle to do this, I would feel so cut off if I didn’t.

 

I hope this poem captures the tension between being loved and part of community and also the weight of illness and disability which can rob you of these relationships and experiencing the intensity of close relationships. This is where equipment like wheelchairs and walking frames facilitate relationships and connection. I don’t use these and I currently end up staying home and in bed when my mobility deteriorates. In many ways, I become cut off.

 

This poem also leads towards a cure and being healed, which remains a bit of wishful thinking on my part. I was excellent only a few weeks ago but dropped my prednisone and am feeling weak at the moment.

Anyway, these are just a few reflections.

 

xx Rowena