Tag Archives: cancer

Funny Friday: An Afternoon With Australian Actor-Author William McInnes

Last Friday, I was booked into an author talk with two-times Logie-winning Australian actor and author, William McInnes. However, after a huge day on Thursday, I wasn’t quite sure whether I’d make it. There was the trip down to Sydney and the emotionally confronting brain MRI but 5 minutes before my MRI, I also heard the dreadful news that Australian cricketer Phillip Hughes had passed away. Having survived brain surgery myself in the past, his death was pretty confronting. I wasn’t in good shape after all of this and more in the mood for deep hibernation. Yet, I was particularly keen to meet William McInnes and hear his story. There are many, many layers to this man.

Exhausted, sombre and dazed, I arrived at Woy Woy Library and sat in the front row where I could literally reach out and touch him. This was a delightfully small and intimate venue where you’re really up close and personal with the author. I was in seventh heaven!! Here I was inhaling the same air as William McInnes for a precious few hours and you never know quite what impact that will have. If you’ve heard his wild and wacky stories, you’ll know what I mean.

Fisherman's Wharf, Woy Woy, North of Sydney. The pelican perch on the roof waiting for fish from any possible source.

Fisherman’s Wharf, Woy Woy, North of Sydney. The pelican perch on the roof waiting for fish from any possible source.

Fisherman's Wharf, Woy Woy.

Fisherman’s Wharf, Woy Woy.

If you’re not Australian, you might not realise that Woy Woy is a bit of an unlikely location for an author talk of any sort let alone by a two-times Logie-winning actor and best-selling author. Although Graeme Simsion author of the Rosie Project recently spoke up here, Woy Woy is better known as being home to Spike Milligan’s Mum, having the best fish & chips and for its flocks of hungry, aggressive pelicans self-educated in the fine art of food theft. They’ll snatch your bag of fish & chips straight out of your hand without so much as an apology. That said, there has been quite an influx of refugees from Sydney and Woy Woy is becoming more eclectic.

It is no understatement that McInnes literally burst into the room converting this humble space into a stage…his stage. This man has presence…serious presence. There was gag after gag after gag.

William McInnes in uniform in the hit Australian TV series Blue Heelers.

William McInnes in uniform in the hit Australian TV series Blue Heelers.

After watching McInnes for years on the hit TV cop series, Blue Heelers, I at least thought I knew how he looked. However, the man who entered the room didn’t match up. His reddish hair was grey. He was exceptionally tall and he was casually dressed. I think I’m used to seeing him in uniform. Police uniform, that is. While he cracked jokes about his middle-aged spread, he still has the physique of the male lead and has been cast opposite glamorous beauties including actresses Sigrid Thornton and Claudia Karvan.

Actor and author William McInnes.

Actor and author William McInnes.

McInnes was there to promote his new book Holidays. I was there not only because of his professional credentials but also because he has publicly spoken and written about his wife, Sarah Watts’ heroic battle with breast cancer, which finally claimed her life around 3 years ago. They co-wrote a book: Worse Things Happen At Sea. I haven’t read this book yet because I needed a bit of a laugh after the last few weeks. Instead, I’m reading: A Man’s Got to Have A Hobby. I was told this book was hilarious, as is McInnes.

Indeed, I found him too funny. We all know about the clown and the tear and I’ve noticed in my own writing that the worse it gets, the funnier I become. When someone is exceptionally funny, I think you’re almost obligated to look for the scar tissue. More than likely, it won’t even be concealed beneath the surface. You’ll see it. Hear it. Even feel its pulse.

However, according to his wife, McInnes has always had a gift for comedy and after seeing him in action, I have no doubt that he’d even do well in that bear pit of stand-up.

While some author talks can get a little dry, McInnes rolled off tale after hilarious tale about his childhood growing up in Queensland’s Redcliffe, a popular beach suburb and on various family holidays. Much of this humour revolves around his father who makes your average embarrassing Dad look like a boring pussy cat.

1970s Barber shop: home of the short back and sides.

1970s Barber shop: home of the short back and sides.

One of my favourite stories was about when he went to get a haircut which, of course, turned out to be no ordinary haircut. If you lived through the 70s, you’ll know that the generational gap wasn’t just about sex, drugs and rock n’ roll. It was also about hair. Usually his mum gave him a haircut but she was busy so she sent him down to the local barber’s with the presumption that he’d return with the usual mandatory, short back and sides. However, it transpired that the barber shop had recently been re-birthed as a unisex hair salon, a new and intriguing development back in the 1970s when getting your haircut was like going to the toilet. There was the men’s, the ladies’ and nothing in between. Definitely no fraternization!

Anyway, McInnes goes into the salon and spots this hot girl he’d seen at the local rollerskating rink. At this point, all sense and reason evaporate and he’s putty in her precious, manicured hands. “Would you like a perm?” She asks. Being a little naive and nothing of a fashion plate, McInnes didn’t know what a perm was but swooning in her orbit, he agrees. Looking something like Goldilocks, with fear and trepidation, he headed home.

Now, you can just imagine how his father, who is renowned for his colourful vernacular, responds to this development. A WWII ex-serviceman, he was far from impressed. He tells him: “When I was your age, I was jumping out of planes chasing Germans”. The kids at school screamed: “Let’s get Horshack” (a character from this his 1970s series Welcome Back Cotter with an afro) There was also a hilarious run in with one of his school priests which I can’t even begin to relate. A bloke having a perm was beyond the pale! The whole experience was even too weird for McInnes. He soon shaved it off and his Dad was happy: “That’s a real man’s haircut”.

His memoir: A Man’s Got to Have A Hobby is full of such stories. The funniest I’ve come across so far, relates about  when he needed to go to the toilet on the way to his football match. They pulled into the service station and Dad reminds him to watch his mouth. After all, back in the day, it wasn’t polite to say you needed to go to the toilet. Oh no! Like many families, they used a swag of euphemisms instead. Out of respect to his mother’s sensitivities, at home they called it: “going goggers”, which in the great tradition of Australian speech, was abbreviated to: “I go gogg goggs.” You can just imagine why the poor petrol station attendant was so confused! He continues:

“Dad must have seen me having trouble from the lime-green ute and flung open the door. He tried to make things clearer. “For Christ’s sake…the boy wants to go goggers.. Goggers…gog…gogs…”

Still no comprehension from the attendant… ‘Listen, chief, the boy has to back out a mullet…Oh, Jesus wept, he wants to strangle one’…Still the attendant stared, …I whispered, ‘I have to poo. Can I use your toilet, please?’My father poked me with a finger. The attendant gave me a key. Dad growled. ‘Don’t let your mother hear you talk like that.”[1]

Let me reassure you that this is not how the average Australian speaks. We usually ask for “the throne” although we’re quite capable of using the word “toilet” in public these days. After all, it’s only natural!

As you can imagine, after all these laughs, I was not longer feeling lugubrious and had cheered up. Humour really does work magic.

While it really is impossible to separate William McInnes actor and author from the William McInnes husband and father who lost his wife,  this journey requires further work and consideration. I don’t want to do a rush job but give their story the time it deserves. It is a journey that our family is potentially walking although I seem to have more lives than a proverbial cat. I seem to be doing pretty well.

Stay tuned for the next installment.

xx Rowena

[1] McInnes, William; A Man’s Got to Have A Hobby, Hodder Australia, Sydney, 2006 pp 38-39.

Death to the Christmas Tree

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

That was to get rid of the Christmas tree.

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

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

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

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

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

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

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

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

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

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

That means getting rid of that tree this very instant!

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

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

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

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

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

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

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

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

Goodnight.

Xx Ro

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

 

Staying on Course II: Husband & Wife

As a writer, I am very good at theory and not so versed in practice. After all, if you use up all your time writing about your dreams, hopes, goals and aspirations, unless you are mighty fast on the keyboard, that doesn’t leave a lot of time for implementation…the doing part of the equation…especially when it comes to spending time with my husband! Hmm….

Unfortunately, we didn’t get a photo of Geoff and I kayaking together but Geoff is behind the camera in this  shot. Hopefully, I’ll update it next weekend when the kids are here to take the shot.

Monday 20th January, 2014

Well, as usual I was in prime form yesterday morning. Despite desperately wanting to go out in the kayak with Geoff for some couple time and to also show him the mangroves which I’d explored with Mister on Friday, I spent at least an hour writing about Geoff’s tips on kayaking…writing about how to kayak instead of kayaking itself. We live in a tidal area and you have to take the kayaks out at high tide or you can’t get back. There is some leeway but to some extent it is a case of act now or you’ll miss out. You can’t really procrastinate, defer or delay.  You just have to go. As I was philosophising away on my theories, the water was literally ticking away…tick tock, tick tock…dong!

My justification of course was that I wanted to “seize the advice” before it drifted through one ear and paddled downstream straight out the other ear.

Yesterday morning, Geoff and I set out on a kayaking adventure together… an opportunity to put some of my new found paddling expertise into practice. As it turned out, Geoff had many more tips hidden up his sleeve and kayaking also had a lot to teach me about how to achieve my goals.

http://www.youtube.com/watch?v=6T3RS78Tp58

As I mentioned in my previous post, Geoff is an experienced white-water kayaker. He’s traversed the infamous Corra Linn Rapids in the South Esk River in Tasmania where the original Solo Man commercial was filmed back in 1986. Geoff knows how to operate a paddle and keep a kayak afloat under very adverse conditions so paddling up to the mangroves and back was very elementary. (Geoff also pointed out that the original Solo Man Iron Man Grant Kenny went through the rapids in a “bus” not a real kayak. You see, he might have been the original Solo Man but he wasn’t a Tasmanian!)

I was really looking forward to spending time together and being in our own small couple bubble as we ventured among the mangroves exploring new worlds. We both really love being at one with nature and a million miles away from care, almost melting into the landscape.

Due to my muscle weakness, I find it quite awkward actually climbing on board the kayak. I seem to have two left feet and it’s a bit like trying to do a reverse park with a hill start in a manual. There’s a lot of manoeuvring back and forwards and glancing around between the kayak and my feet to work out what goes where first without tipping the whole thing over. Given the unstable nature of the kayak as well, it is a little daunting but once I’m seated, I’m quite fine and good to go.

Finally, we were out on the water and my kayaking lessons began in earnest.

Geoff had already worked out which way the wind and the current were flowing. This is almost innate to him. He just knows. He reminds me that you start out against the wind and current so you return back with the current behind you when you’re tired on the way home. Energy conservation is a jolly good strategy.

Next, Geoff starts working on improving my stroke to get more power. While I thought I was paddling along okay, Geoff advised me to hold my paddle more vertically. I also needed to sit up straight. We were using the Power Stroke. This was a bit of a struggle with my limited arm strength as well as being a new, uncomfortable position but I persevered. I wanted to learn how to paddle properly and become a Solo Woman myself. Building on the Power Stroke, Geoff then advised me how to use my feet and push with the foot on the side of the paddle so that I was using my entire body to move the kayak forward instead of just my arms. This would really give us more momentum.

While we are paddling along, Geoff is “reading the water”: looking out for obstacles such as shallow water where we could get stuck and tracking the strong headwind. He is enjoying the ride and also looking out for fish. A guy on a windsurfer shoots past and that looks pretty fun too.

As the more experienced and stronger paddler, Geoff compensated for my weakness and there were times where I had to stop paddling and rest and he carried my load. This was much appreciated because reaching the mangroves was beyond my capabilities but we pulled it off because he compensated for me and we worked as a team.

Such detailed advice isn’t always appreciated between husbands and wives. Just consider a parallel situation of a husband telling his wife how to drive a car. You can really feel the sparks fly. Yet, a bit of constructive criticism really should be welcomed on board, acted on and seen as an opportunity for growth, not viewed as an attack, put down or condemnation. I really appreciated Geoff’s input which came from his much greater experience of kayaking. I had the opportunity to learn, grow and improve from my husband and it didn’t cost me a cent. Moreover, we had the opportunity to spend some time together on our own doing something together which we both enjoyed.

From this experience, I could definitely appreciate the value of having a coach to help you reach your goals. You don’t need to reinvent the wheel and you can fast track your progress by coasting through on the wake of their experience.

There is also greater strength in numbers and while there are times where it’s great to be the quintessential Renaissance man or woman…the all-conquering individual…there are also times where you don’t want to go it alone. That is a tremendous relief to have a problem shared and such pleasure in sharing the experience and having your horizons broadened through someone else’s eyes and vision. We all see something unique and different even looking at the very same spot. This is the exciting and challenging thing of being a living, breathing, flexible and integral part of community.

However, for the full benefits of a coach to be fully appreciated, you also need to be coachable. Willing not only to listen and act on that advice but know how to handle constructive criticism and use it as an opportunity for growth instead of a perceiving advice as a personal attack. I have experienced fairly intensive advice and criticism in my violin lessons and it has made such a difference. Remember, I received that A in my preliminary exam…a result I achieved because I listened and acted on advice instead of being “precious”.

Unless you are open to criticism, correction and inhaling and implementing advice, you’ll never grow. While it may be less confronting to read a book of life lessons and apply them to your life, it is far more effective to heed the advice of someone who knows us well and loves us and applies that personal but probably more painful touch. This is probably the greatest gift we could ever receive. Yet, rather than being thankful and appreciating the inherent risks of speaking out, we’re more likely to beat our loved ones over the head with a stick or go off and sulk. Somehow, we need to learn to be more gracious and  listening, accepting feedback and find ways of implementing the required changes to grow. Become the very best person we can be.

I am now coming to appreciate that personal growth and change is an ongoing life-long process. We are constantly refining and refining ourselves in a never-ending process of growth. Growth which isn’t a striving towards an oppressive perfectionism but rather the joy of feeling yourself extend beyond what you thought was possible and to enjoy fresh green buds and emerging flowers and feel your entire being come alive and you step out of the chains of bondage. For me, this means being able to love and give more freely because despite what’s going on in my life, I am fine. I might not understand what is happening in my life or why but somewhere it is all integrated into a larger whole and God is walking with me guiding my path taking me on an exhilarating journey.

After all, none of us is set in stone.

Rather, we are a seed.

The funny thing about seeds is that they usually don’t just fall straight out of the tree and instantly start to grow. Rather, there is usually some kind of journey involved and these adventures usually aren’t very glamorous at all! An animal eats the seed transporting it a very long way from home and it takes time before the seed can sprout. Many seeds go astray. Just think about how many kids find an acorn and stick it in their pocket? Of course, the child doesn’t know what they’ve done. That they’ve taken all that awesome potential and stuck it on hold. The acorn simply can’t grow into an oak while it’s sitting on the shelf. Of course, the acorn probably gives up and thinks it is the end of the road but there is always hope. The acorn is still a seed and perhaps it is just a matter of time.

We need to embrace our own journey and then plant ourselves, our goals and our dreams in fertile soil and nurture them with sun and rain. Then we can become oaks with soaring branches deeply rooted in love.

I should also point out that the ultimate purpose of all this personal growth and refinement isn’t about the self-indulgent pursuit of personal happiness and fulfilment. It is actually geared towards being a fully functional, giving part of our community with a body, heart and soul which is able to give and give abundantly. Becoming the wondrous oak tree in the park providing shade and shelter to birds, insects, children with its strong and sturdy branches stretching up to the sky and absorbing the sun.

Finally, Geoff and I had a really lovely paddle together. Geoff seemed to be focused on looking for fish while I loved looking at the reflections of the mangrove trees on the water. Geoff always seems to see so many little things which I miss like the oysters growing on the trunks of the mangroves. I did see many, many little fish among the mangroves. That was very encouraging because I do wonder just how many fish are in the ocean these days and whether they are running out.

Unfortunately, I can’t share any photos with you because I didn’t want to risk the camera getting wet. It hasn’t learned how to swim yet.

We are a living breathing work-in-progress constantly changing and never standing still.

PS Tuesday 21st January, 2014

I would like to remind you that I am currently going through chemotherapy and also having high dose infusions of prednisone. These are drugs just like any other kind of drug and I know they are very definitely influencing and shaping not only my writing but also my vision…what I see. A lot of my friends who have been on high doses of prednisone talk about going on cleaning frenzies and I am starting to wonder whether that is as much about seeing what’s around them more clearly as much as having the added steroid energy boost.

I have definitely found a level of clarity and insight that has been quite staggering and intense. At times, it’s been like a thunder bolt has hit. I see something so clearly. I can see something in someone else so clearly that it is mind blowing. Now, I can’t always test these insights out and know if they are real or just the drugs talking but it is certainly interesting and you see those kids with cancer on TV and they get very profound and it is profound when you are facing your own mortality but there are also the effects of the chemo and I don’t know what they are.

As a bloggers, I think most of us are seekers. We are looking out there for insights into life and hopefully how we can become better people and collectively make the world a better place. We can’t experience everything in life and face it, who really wants to go through the chemo experience. However, this has been my lot, my journey and I am trying to share it with you as earnestly as I can. Putting you in my shoes. You can come to chemo with me and the good news is that neither of us are going to lose our hair!

xx Ro

Another PS: I just chose the title for today’s post and thought it deserved a bit more attention. I chose to continue the staying on course theme from my previous post and it is about kayaking and goal setting but staying on course is a serious difficulty in any relationship. When I was a kid, you’d hear stories of couples having another baby when their marriage was on the rocks to bridge the gap. I don’t know if that happens anymore because I most of us realise that as much as having kids draws you together as a couple, it also divides. Add years of living with a chronic, life-threatening with all it’s inherent medical emergencies and it is very difficult to invest enough time, energy and nurturing into that relationship to keep it fuelled. Fortunately, my parents took the kids for yet another night while Geoff was still on leave and we were able to get out there on the water kayaking together despite my incessant writing and we were able to go out for dinner just the two of us two nights in a row. We were about to feed our relationship and help some of those ragged nerve endings grow back. Our relationship needed to rebuild its neuro pathways as well and reconnect.

Day 2- Atlantic Salmon and Salad

Tuesday 14th January, 2014

Atlantic Salmon with Salad

Whoever mentioned the health benefits of omega 3 forgot to disclose the price tag…$26.00 for three somewhat modest fillets to feed our family of four. For that sort of money, I’d be wanting the whole fish and its mate included. I was mighty thankful, therefore, that our kids only peck at their food like sparrows and aren’t ravenous teenagers yet. Otherwise, we’d be taking out a second mortgage (Geoff said we still might have to stick our cap out on the street after my visit to the op shop. My claims that I was actually “saving money” fell on deaf ears!!)

Although I flinched at the cost and almost went into cardiac arrest, I re-directed and focused on how this miracle fish bursting with omega 3 was going to save my life. After all, I am on chemo and I have a nasty auto-immune disease which has flared up. I need to be very, very healthy indeed. Health is my new mantra. This fish was literally what the doctor ordered.

As the salmon only needed a very quick pan fry, we started off by making the salad.

Here’s a rough recipe:

Snow Pea Salad

Approximately 2 handfuls of snow peas strung and sliced into thirds

Diced sweet potato roasted

Cherry tomatoes sliced in half

Grated carrot

Grated cheese

Small cubes of Wasabi cheese 5mm wide.

I started Mister off on grating the carrot. Grating always seems simple enough to me and yet the kids struggle with it. It was yet another instance where I came to realize how much the kids still have to learn and the importance of patience and a supportive, guiding hand on my part. Of course, Mister complained about grating his fingers and I repeatedly had to show him how I held the carrot with my fingers up the top with the top of the carrot pressing against the palm of my hand. Then I noticed the grater sliding around the chopping board in his left hand and reminded him to hold it down so it wouldn’t slip around. More than once Mister said he couldn’t do it but I showed once again and he had another go…persistence! He was all smiles and his growing confidence shone like the sun.

Next we moved onto the snow peas. Last night it was Miss’s turn and tonight Mister was having his lesson with the snow peas. Once again, I had to explain how to find the string. This can get a bit tricky and even I can’t find the string on every snow pea. I’ve never really looked so closely at a snow pea before to work out where all the bits are. Anyway, the string is on the side which has the peas in it, not the flat side.

Then slice the snow peas into thirds. I recommended cutting about 4 snow peas together at a time to speed things up. Mister was looking to cut up one snow pea at a time into fairly small pieces.

Miss had it fairly easy slicing the cherry tomatoes in half.

Couldn’t buy a ripe avocado for our salad tonight. Apparently, the avocado I bought will be ready for Friday.

The advantage of this salad is that if there are bits which the kids don’t like, you can do an adult version after you have dished up for the kids. We added small squares of Wasabi cheese and diced roasted sweet potato to ours. When I am organized, I try to keep roasted sweet potato and pumpkin in our fridge. It keeps for a few days and you can add it to so many meals. To roast it up, I simply spray the tray with oil or use olive oil add some crushed garlic and toss the pieces around in the oil and bake at 200°C. Easy peasy!

This salad would also be great with some roasted macadamia nuts and some olives.

Atlantic Salmon

I cooked Atlantic Salmon for the first time last week. It was a bit of a daunting process. You could say that fish was fish. Mum just coats both sides in flour and then cooks it up in a hot pan with butter. However, Atlantic Salmon seemed a bit special and so I wasn’t sure quite how to cook it. Mum was busy cooking dinner for the kids at the time and so I resorted to Google instead. That recommended a very quick 5 minute fry on each side and it was cooked to perfection.

Last week when I was on my own, I had ordered the somewhat cheaper steaks and the bones were a hassle. This week, however, I ordered the bone-free fillets to keep Geoff and the kids happy. These fillets were quite thick and a challenge to cook. Geoff likes everything cooked to well done and raw patches wouldn’t go down well at all with him although I didn’t want to destroy it either. Salmon does seem a little delicate.

Each of the children rolled their piece of fish in flour and dropped it in the pan. I cooked it on the hotplate in my Dad’s grilling frying pan with plenty of butter. Cooked skin side down first. Cooked each side and turned down the heat to cook it through. It was perfect. Served it with fresh lemon juice. Miss added tartare sauce which was a bit disrespectful. Even Geoff said he liked it and he’s not much of a fish eater so that was quite encouraging.

Somewhere around dinner time, the sun started to set across the bay and I couldn’t help reaching for the camera to capture the golden sun setting behind the gum trees. It is also around sunset that the local cockatoo population goes crazy and starts doing kamikaze laps overhead squawking and screeching in a dreadful chorus.

So it seems that we have now passed the fish test. Tomorrow night, we will be cooking pizza from scratch and from scratch I mean using dried yeast and watching the dough rise the old-fashioned way in a sink filled with warm water instead of using the bread maker. I thought the kids would enjoy watching the dough rise. I’ve always loved it. Another moment to share with the kids although I have to be honest that writing up about our cooking project is taking up a lot of time that I should actually be spending with the kids.

We will also be baking an Apple Pie.

I’ll looking forward to our next culinary adventure.

Xx Rowena

Monday Night: Getting Started

Day 1- Monday 13th January, 2014

Lamb Chops with Snow Pea Salad and Roast Potatoes.

As everybody knows, Monday is always D-Day. No! You can’t change your life or turn over a new leaf on a Tuesday, a Wednesday or especially a Saturday. No! Everybody knows that your new life can only begin on a Monday. If you forget to get started, slip up, break the rules or totally crash and burn, everybody knows that you have to wait a full week before you try again. It’s an unwritten code…an understanding. A new life can only ever begin on a Monday.

I learned these life principles going on “diets” and have since discovered that the Monday rule applies to all life changing goals.  Monday is a new day…a clean slate. It’s like you somehow become an entirely new person and all your weaknesses and foibles are gone. You can do anything and even achieve the miraculously impossible. Scientists might disagree but I’m sure there’s even some change to your very DNA but only on a Monday.

Well, this Monday my “Teach the Kids How to Cook” project went into full swing after a bumpy introduction or preamble over the weekend.

Our first dinner was going to be relatively simple:

Lamb Chops

Salad

Roast potatoes

Roast Sweet Potato

A cutlet smile from a cheeky lad.

A cutlet smile from a cheeky lad.

I’m not going to go into the ins and outs of cooking lamb chops. That’s straight forward although we did add some rosemary from the garden. It was the kids’ job to go and pick the rosemary and this provided them with a bit on an introductory lesson on herbs. There are a couple of huge rosemary bushes here so we are rather blessed with vast supplies which we can generously add by the handful.

The focus of this cooking exercise was making the salad. It is summer time here in Australia so it is essentially salad season. Learning to make any kind of salad has been an extensive learning curve for me over the last couple of years. While I did grow up with coleslaw and a rather exotic (at least for the 1970s) mandarin salad which my grandfather made, salad was an iceberg lettuce, tomato and cucumber drowned in some kind of dressing. I haven’t really mastered lettuce. I tend to feel that I look at the stuff and it shrivels up and dies. Consequently, our salad was based more on snow peas which we strung and sliced into thirds. It was challenging getting the kids to string the snow peas and having to work in slow motion to explain where to find the string and how to pull it off. As adults we do all these things on auto-pilot but for the kids, these activities need to be broken into much smaller nibble bites so they don’t just give up with an “I can’t do it”.

Our avocado was perfectly ripe and ended up becoming a sort of dressing over the snow peas.

Cherry tomatoes were cut in half and added to the salad.

At home I would have added some balsamic vinegar but we didn’t have any and with the avocado, the salad didn’t need it.

Both kids asked for more salad and were fighting over the dregs. That is very encouraging. My kids are not great eaters.

We also had roast potatoes. I boiled up about 6 potatoes in their jackets for 10 minutes in the microwave. At home, I would then squash and roast these in the sandwich press or waffle machine with a minimal amount of oil but I was a bit naughty and fried them up in the chop pan with more rosemary. I was using a special griller pan with a ridged surface where the fat drains away from the cooking surface so it wasn’t perhaps as unhealthy as it sounds. I cut each potato in half and roasted the skin-free side. Yum.

While I was in a chopping and roasting kind of mood, I peeled and diced a sweet potato and roasted it at 200 degrees in the oven with some rosemary and crushed garlic. You can spray the tray with oil or drizzle with olive oil and I usually use baking paper to reduce cleaning. Our kids don’t like sweet potato and I don’t always push the point. Tonight, Geoff and I had ours hot with a bit of honey drizzled over the top. I made a mental note that macadamia nuts would also go well with this. The idea with the roast sweet potato is to keep a container of it in the fridge to add to salads and Wednesday night’s pizza. I love such quick and easy nutrition.

Congratulations Rowena and kids. You have passed the Monday test. You can proceed to Tuesday…Atlantic salmon and salad.

Chemo Sonata

Beethoven’s Moonlight Sonata is almost fused to my path, my journey, memory. Well, to be perfectly honest, we’re only talking about the first movement. It seems to be a genetic family trait that we only manage the first movement and don’t seem to progress.

My childhood resonates with Moonlight Sonata. It is my father’s piece…his song…his dance. Dad runs like clockwork. He’s largely methodical. He has his routines and used to have “a place for everything and everything in its place” once upon a time. Dad didn’t concern himself with the things like feeding children and dogs, closing windows, settling rowdy children for babysitters or applying makeup before it was time to go out. He was just ready. This meant that while Dad was waiting for Mum, he sometimes calmly and often impatiently, sat down at the piano and played Moonlight Sonata its soft rhythmic tones contrasting with my mother’s rush and bustle.

One of my most precious memories of my grandmother Eunice Gardiner  http://www.smh.com.au/comment/obituaries/a-musical-career-honed-in-the-laundry-20090823-ev2w.html who was an accomplished concert pianist also involved Moonlight Sonata. She was in what you would call her twilight years. Her memory was failing in all sorts of ways as her bright intelligence and wit were not so gradually being attacked by the cruel ravages of Alzheimer’s Disease. She told me a story about how her older brother Les had asked her to play Moonlight Sonata at a party he was having when they were young. Although she was a brilliant pianist, apparently she too only knew the first movement of Moonlight Sonata at least from memory and when she didn’t play on, he brother apparently remarked “even I can play that”. After telling this story my grandmother went across to the piano and tried to recall Moonlight Sonata and instead went on to play a patchwork of snippets from a range of highly complex pieces including Chopin’s Raindrop Prelude. I wasn’t really into music at the time and didn’t know what any of the pieces were but I was amazed at how she’d somehow stitched all these complex pieces together like the squares of a patchwork quilt. Strangely, I somehow loved her more than ever then and was very touched by a musical gift that somehow transcended human frailty and the ravages of disease.

I learned the piano for many years and while I haven’t kept it up, I will usually sit down and play Moonlight Sonata on what used to be my grandmother’s Steinway Grand piano whenever I visit my parents. I tinker away from memory with many repeats and returns trying to kick start my memory and faltering fingers. I still like to believe I can play even though putting two hands together to even play C Major scale these days, is a challenge.

Playing Moonlight Sonata after chemo.

Playing Moonlight Sonata after chemo.

Quite often, I visit my parents  after trooping down to Royal North Shore Hospital for medical appointments and treatments. I was playing Moonlight Sonata after my latest chemo treatment last Thursday when I noticed my hands on the keyboard with the tell-tale bandaid “spots”. It had taken three attempts to get the canula in, largely because we were trying my more resistant left arm so I could write with my right. In the end, we gave up but I was lucky because I was still able to write. I am a determined soul and like most writers, quite the addict. I must admit that it does seem rather crazy now…pen pushing while you’ve having chemo pumped into your veins which perhaps could have used a little rest. All the same, you are who you are.

Anyway, I asked Geoff to photograph me playing the piano with my hands covered in my spots. It was another one of my laugh or cry moments and I mostly saw the humour of the situation. I love photographing hands and also love using the piano as a photographic prop. I have numerous photos of the kids’ hands in various sizes tinkering away on the keys.

Miss aged 15 months at the piano.

Miss aged 15 months at the piano.

A duet Easter 2007

A duet Easter 2007

I also asked Geoff to film me playing.  Not a perfect Moonlight Sonata but my version just how I always play it going over and over and over the various bit of the first movement and back to the start stumbling through the notes in a fusion of emotional expression, a question for perfection and even a touch of moonlight on a dark night. Another reminder that things don’t always have to be perfect and that it’s more important just to have a go and do what you can.

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- 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